I'm writing what I know on the subject from research, doctors and personal experience. Many other reviews and an internet search will give you the more specifics of the condition for more detail - I didn't want to end up with a 100,000 word review!
The basics of PCOS are a hormone imbalance, trouble conceiving, irregular or absent periods, weight gain, excess hair (hirsutism), acne - people seem unable to agree on cause. If you're overweight some doctors blame that, according to some sources the lack of ovulation causes the rest - ultimately the starting point/cause is unknown for most people. There is evidence that it may be at least somewhat hereditary.
***Polycycstic Ovarian Syndrome and Polycystic Ovaries*
To start with I will say you can have ovarian cysts and not have PCOS. Many women have polycystic ovaries without any of the symptoms of PCOS - the syndrome part being the important point. Even more women will have cysts with only 1 or 2 symptoms that are often written off as due to other causes or not even reported. It's not a set thing that you must have every symptom - many women only find out about the condition when they have trouble conceiving as they've had no other symptoms. A few women have PCOS with no cysts, just to make things more complicated. Ultimately symptoms are not always reliable.
Doctors are not always entirely helpful with this condition - as a reasonable number of women with it are overweight or obese, this is often blamed for their symptoms, as obesity alone can cause some of these symptoms. It's also a condition that doctors will say you probably have and never follow up on properly - it took years for me to get a formal diagnosis and treatment, unfortunately this isn't uncommon.
***Pushing for diagnosis***
I shouldn't have to write this part, yet as stated it seems to be a major issue. Diagnosis can be done with either a full set of blood tests or with an ultrasound, procedure seems to vary as to which is used initially, in my area it's normal to do blood tests and if needed an ultrasound to confirm.
If you're not getting these done push and if needed, don't hesitate to change doctors. I know women sometimes feel unsure of going to male doctors with gynecological issues, but they're just as qualified and based on the experience of many people I know who suffer, less likely to push patients off as complaining about what are actually normal periods or amount of hair and such.
I was initially told I "may" have PCOS at around 14-15 years old - I was put on a standard pill to "treat" the symptoms which was at best ineffective and at worst, made me feel ill. Unfortunately I was grieving after a parental loss and didn't realise the pill I was on wasn't actually even the slightest bit effective at treating PCOS. I had periodic changes in medication and blood tests (I later found out they weren't al the tests needed to diagnose) - earlier this year I changed doctors and finally got an official diagnosis and am now recieving treatment.
The issue is, untreated PCOS gets worse. My weight has increased (partly PCOS, partly too-much-in,too-little-out due to other issues, but I would have been able to control it better with treatment), I've developed the acne associated with the condition, I look far more gorilla-like and am way behind in getting it sorted. This is why the earlier diagnosis the better - trying to correct hormones that are 10% out is easier than 50% out (random percentages).
My symptoms are the period issues (heavy when a young teenager, then largely absent), severe pains, hirsutism (excess hair, on my face, chest and abdomen, generally thickened and darkened hair and fast growing), acne, weight gain, thin hair (head hair - the androgens simultaneously cause excess hair growth on the body and can cause thinning on the head) and oily skin. I certainly have fertility problems but as I've not tried to conceive these do not effect me at present.
As a result of it being left untreated I'm also now at severe risk for type 2 diabetes - weight loss will hep this but ultimately it being left untreated builds up the likelihood - another reason it is especially important to get a correct diagnosis and treatment.
The good news is for me, treatment is proving effective - it takes months to start truly changing your hormones and the symptoms (especially hair) can take a lot longer to show any improvement as your hormones need to be normalised and your body given chance to catch up, however my blood tests do show an improvement, I've also had far less of the ovary pain associated with the condition. I've been on it about 4 months and it's likely to be 6-12 before the symptoms are truly easing due to how far out my hormones were, but it can improve and is worth treating.
These are some things that have been linked to PCOS:
- Depression, Anxiety, Low self esteem, confidence problems - all may be related to the fact that many women feel bad about the excess hair and other external symptoms, although I have heard some people consider that depression may be hormone related. These things can be treated in their own right with appropriate self help, counseling or even medications if needed.
- Diabetes - related due to the effect that PCOS has on insulin resistance which can lead to diabetes - it's not a definite thing, many people never develop diabetes but sufferers are high risk.
- Obesity - while often classed as a symptom it's also a linked illness/disease/concern in it's own right. Insulin Resistance makes gaining weight easier and losing weight harder - how much is not agreed on, but it's definitely a factor. Obesity also makes PCOS symptoms worse (which can then cause weight gain - nice cycle, right?) - to break this you need to tackle one or preferably both to make the other less problematic.
My final word is some help with those pesky symptoms.
Facial (and other) hair - facial hair can be removed by shaving, epilating, waxing, tweezing and a few other less common methods. I like epilating as it removes the hair for longer than shaving - although it is more painful. I, I think like most PCOS sufferers, use a mix. I epilate regularly, shave if needed to remove hair inbetween/if I'm in a rush/can't face the pain, and tweeze a fair bit for those annoying hairs or right on my chin (where epilating hurts worst and is least effective for me) - don't expect to be able to stick to 1 method if using root removal as the hairs can grow so fast sometimes you'll find you can't bear to leave it. Bear in mind though the fast growing hair symptom can make shaving awful - I'd often need to shave in the morning and then again a few hours later if I was relying on it alone, which isn't pleasant or good for your skin.
Bleaching also works - I use jolens bleach on my upper lip hair (the "m" word makes it feel worse!), arm hair and chest - the latter 2 I don't need to do as often and unlike on the face tend to not be noticable if just bleached. Upper lip tends to be a mix of removal and bleaching - I prefer removal but it can be harsh on that area.
Finally - it's less noticeable to those around you than it is you, so if you have a few chin hairs - don't panic!
Acne - normal acne advice works, one thing I will say is moisturising helps, not hinders - dry skin produces more oils which can make acne worse. Also bear in mind you may find some hair removal techniques irritate acne, so you may want to tailor your choices around it. Mineral foundation eases mine a fair bit and covers it well for most days.
Thin head hair - you're slightly limited to what you can do about this. It also killed the condition of my hair completely - a good cut can help, as can the right styling products. Anything volumising can be helpful, as can something for dryness. My hair is dyed (blonde) which doesn't help the condition of my hair - but the ends dry out stupidly anyway since the hair isn't as healthy and it makes me feel better, so it may still be worth doing if you're fed up of your natural colour!
Well I know this has ended up very long but I hope it helps somebody - even if to just feel less alone. My summary is it sucks, but get help even if you have to push for it - and don't let it rule your life!
*Disclaimer: I am not an MD so what is written here is no substitute for medical advice, but rather an encouragement to seek proper medical care. I see a private consultant gynaecologist once a year, and lots of my knowledge comes from what he has told me over the years and from consultations with endocrinologists*
* What is the PCOS and how it affects us *
PCOS = Polycystic ovary syndrome ('polycystic' literally means 'many cysts' in Greek) affects more or less 20% of women today. Instead of the term 'pathology' or 'disease', it is being referred by some doctors as a 'variation of the normal' due to the high prevalence of the condition. It is a condition that was initially thought to affect only the ovaries by giving them a characteristic polycystic appearance, and thus affecting the sex hormones produced by the ovaries. This is why in the past it was known simply as 'polycystic ovaries' condition. Nowadays, however, after years of research, it is known that it is a complex condition that may or may not always affect the appearance of the ovaries.
The ovaries are polycystic when they show many small cyst-like formations scattered under the surface of the ovary. When the condition remains untreated, often one of these small cysts may get out of control and become large, even burst, causing bleeding. In older women there is the danger that this benign condition changes to ovarian cancer. Also, some women may have very infrequent periods, thus reduced fertility, and this irregularity regarding the periods may cause uterine cancer later in life, because the womb lining is not shed often and properly through the years via normal monthly bleeding.
* The Symptoms *
Due to the changes in the hormonal profile of women with PCOS some women suffer from various degrees of excess weight and body hair. However, the degree of the PCOS is not the same for all women; there are lighter and there are more serious manifestations. Symptoms include (BUT a PCOS sufferer does not necessarily tick all the boxes):
- absent or infrequent periods: a common symptom of PCOS. Periods can be as frequent as every five to six weeks, but might only occur once or twice a year, if at all;
- increased facial and body hair (hirsutism): usually found under the chin, on the upper lip, forearms, lower legs and on the abdomen;
- acne: usually only on the face;
- obesity: a common finding in women with PCOS because their body cells are resistant to the sugar-control hormone insulin. This insulin resistance prevents cells using sugar in the blood normally and the sugar is stored as fat instead;
- hormone abnormalities: mainly raised androgens (male hormones usually found in women normally in tiny amounts).
* Diagnosis *
The standard tests for checking whether you may have PCOS are:
- a hormonal blood test (male and female body hormones). Also testing the insulin and glucose levels is important because women with PCOS may have insulin resistance, pre-diabetes/diabetes as part of a complex hormonal imbalance called 'metabolic syndrome';
- Testing the thyroid function is also very important because PCOS may cause the thyroid to run slow (hypothyroidism);
- an ultrasound scan of the ovaries and the uterus, which can be vaginal or external. In the former case you will need to empty your bladder before the test. In the latter case, on the contrary, you will need to drink about 1 lt of water in half one hour just before the test, without going to the loo, in order to keep the tummy swollen.
* What causes PCOS*
It seems that heredity has something to do with the condition, although it is still not certain if this is the only factor. Ongoing research is trying to clarify whether there's a clearly identifiable gene for PCOS or if several different genes lie behind the way in which the condition is expressed so differently in women. Even if there is some genetic basis, it's unlikely that ALL women with one or more of these genes will develop the condition.
* Treatment *
You may have PCOS and be skinny, esp. when you are young. But overweight women are more at risk at developing the symptoms or at developing them more seriously. So, maintaining a healthy weight or body mass index (BMI), is important in order to control the condition partly, improving the hormonal abnormalities and the likelihood of ovulation and therefore pregnancy. PCOS may also cause pre-diabetes or diabetes type 2, so maintaining a healthy weight, without too many sugary foods, is critical. Some physical exercise seems also to help, but research cannot say yet how much weight or how much exercise is optimum for the condition.
There isn't a cure for PCOS. BUT it is very important to be in control of the symptoms in order to avoid future complications (cysts, tumours, diabetes, infertility) and improve the cosmetic issues (excess hair, acne). The only way for effective control seems so far to be the hormonal pills, usually the contraceptive ones. Yasmin is particularly effective against the androgenic manifestations (it regulates the periods, the excess hair and acne). When the symptoms improve and you get control, you can try Yaz or Qlaira which are 'lighter' (less amounts of hormones). There are some limitations to these pills such as a history of blood clotting, heart disease, cancer and smoking. Usually, they are not recommended for women over 35-40 (you must be a non-smoker), but my gynaecologist told me that Qlaira, a new pill with a natural form of oestrogen, can be taken safely until the age of 50, and usually PCOS symptoms are gone by then! If you cannot be on the pill due to the oestrogen, the doctor can put you on a natural progesterone pill only such as Progestan. I was on it for about 6 years in the '90s and used to get 2 pills for just 8 days before my period was normally expected. It regulates the PCOS symptoms, although my body did not like it as much as the combination pill. I had heavier periods and some headaches and sleepiness for a short period after I swallowed the pills, but nothing too serious. It is a good alternative if you don't need/want contraception (Progestan is NOT a contraceptive pill), and the excess acne and hair were gone very soon, as well as any small cysts in my ovaries.
* So, what your GP should do *
ANY period / vaginal bleeding irregularities should not be overlooked by the GP. Not wishing to 'blow' the NHS budget by ordering further tests is unethical and a sign of neglect. The horror stories I hear are unbelievable. Your GP should carefully listen to you, examine your physical symptoms (excess hair, acne) discuss your period irregularities with you and whether you experience any pain, order initial blood investigations, ensuring they are carried out at the correct time of the cycle if appropriate and, when the results are back, arrange an ultrasound scan.
!!! If the GP ignores your concern or is dismissive without properly discussing your issues with you, ask for another GP and write a complaint letter to the Health Centre Manager and even to the press !!!
Once the diagnosis is made, any conditions such as high prolactin or TSH (thyroid stimulating hormone) levels should be addressed and treated, preferably by a specialist endocrinologist. Any findings such as big cysts should be referred asap to a gynaecologist, who is the best person to prescribe a suitable hormonal pill, a possible removal or an observation plan.
Contrary to what is widely believed, the suppression of ovarian activity by taking contraceptive pills is good for the ovaries and the uterus, and the ovaries will respond better if the time comes when a pregnancy is desired. DON'T be put off by the denial of the NHS to put you on the pill in order to avoid paying for your contraceptives. There is absolutely no reason to even think that you need to remove your ovaries because of PCOS! It is a benign hormonal condition that can actually improve with age (after the menopause) or after you have given birth. It just needs to be monitored yearly and treated with the right pill.
Using medications to lose weight may be effective, and orlistat (Alli, Xenical) is trusted by endocrinologists.
* Final words*
I know that some of you are disappointed about me not stressing constantly that I am talking about my experience here. However, this does not mean that this discussion does not reflect MY views on the subject. Having read other members' horror stories about how their GPs do not give proper care to the PCOS problem, I decided to write about the kind of doctors I consulted, MY personal knowledge about the subject, what I would expect from a GP and what I recommend other women to expect from their GP.
I don't agree that these are things you find elsewhere; no GP or UK site tells you on your face that if untreated, the condition may lead to uterine and ovarian cancer. Very few GPs will tell you that e.g. the Qlaira pill can be used until the age of 50 and that the pill in general could be actually GOOD for your fertility. (I can't believe that some women actually think they need to remove their ovaries and that they are doomed in infertility because of PCOS.) This is knowledge I acquired through the years from more than one outstanding consultants, to whom I was very lucky to have access, and I wished to share it here, because I have been living with PCOS for 20 years and it was never an issue in my life; it breaks my heart to read about the struggle of so many women to persuade the system to look after them. If it cannot be appreciated by some people in here, so be it.
* For more info also see:
My periods have never been regular, and have never been ideal - they started when I was 12, and would last 28 days but would be ever so light - then I wouldn't have another one for a couple of months. As I got a bit older, and my body changed, they started getting shorter and lasting about 2 weeks, but again, they wouldn't start regularly. I stopped doing gymnastics at 18 and went to University - putting on a bit of weight helped; they would last between 4 and 7 days, but could be every 2 weeks to every 3 months.
I went to the doctor and was put on Cerazette - a pill that stops your periods completely (I couldn't have Microgynon as the extra oestrogen would increase my chance of heart problems given my family history). I had a 3 month long period at the start, so kept going back to the doctor to ask about that and the fact I was having abdominal pains during sex (dysperunia I think he called it). His first thought was that it was just the pill, but my return visit made him consider PCOS.
He talked me through what it was, and the symptoms that I shared with the condition. I couldn't have a blood test to check my hormone levels as I'd already started the pill - so he booked me in for an ultrasound (internal and external, but I only had the external one when I went to the hospital). What got to me most was when he said that it led to infertility, and with my past history of irregularity and the possibility of this, my chances of conceiving in the future were as low as 10%. I was mortified.
I went for the ultrasound, and went to the doc's a week later for the results - thankfully, they couldn't see any cysts on my ovaries but I was still concerned about the fact I hadn't had an internal ultrasound, as my belief is that PCOS occurs within the ovaries. The only thing they did find was that I had fluid in my 'Pouch of Douglas' - I didn't even know this existed, but it's a sac inbetween your bum and your uterus. He told me he wasn't concerned about it, and so far, that's the last of it - but I researched it and apparently, it fills with fluid when an ovarian cyst bursts.
I'm due back for a cervical swab in September (another possibility of my dysperunia) as the first test showed I had "abnormal cells in my cervix" - so I might ask him then provided that swab goes OK.
For anyone else that might have had the same symptoms as above, don't panic - but make sure you get to the doctor as soon as possible to check it out.
As this is my first review please be kind to me with your comments and ratings :)! (I'm sure you will be)
Anyway I have decided to write about my experience of Polycystic Ovarian Syndrome (PCOS). It is actually a relatively common condition among women in the UK but it can often remain undiagnosed for years so it is quite possible that some of you reading this will have PCOS without even knowing about it.
The condition has many different symptoms but the main one which is obviously caused by the PCOS is problems with your periods. Generally sufferers of PCOS will experience irregular periods and often when they do get a period it will be heavy or long or both. The condition is also linked with a number of other conditions such as obesity (and difficulty in losing weight), diabetes, high blood pressure, excessive hair growth, acne and problems when trying to conceive.
Sufferers of PCOS usually have a number of small cysts on the ovaries, hence the name of the condition but apparently this isn't always the case and you can still have PCOS without actually having any cysts at all. I think it is to do with hormone levels and that sort of thing but to be honest I'm not sure.
It is also quite a difficult condition to diagnose and can take years for some people to actually be confirmed with the condition.
I personally think that I may have had PCOS for years, I started my periods when I was 13 and by the time I was 15 they still hadn't really settled down and when I got them they tended to be quite long and painful so my mum took me off to the doctors where I was prescribed Cilest. The doctor didn't seem too concerned about things and said it was quite normal for somebody my age to have irregular periods and that the pill would sort it out. Now to be fair it did, after a few months my periods became more regular, less painful and less heavy and I continued on with this pill for about 10 years.
Then in 2008 I split up with my boyfriend and as I was no longer having sex decided that I should probably give my body a break from all the hormones I had been feeding it. For the first couple of months things seemed ok and to be honest I didn't even think about the problems I use to have because I just thought it was to do with my age and it was so long ago but then things started to get worse. My periods went back to how they were previously with me going for months without one and then when it did come it would last for up to two weeks at times and be very heavy and painful.
It was then that I decided I needed to go back to the doctors to see what was going on and it actually took until just before Christmas this year to finally get diagnosed. At first, I found it hard to get taken seriously, I think that a lot of doctors don't really seem too interested when you go and see them about your periods and are happy just to fob you off with the pill or tell you it will get better in time.
Personally I had a lot of different tests (blood and hormone) over an 18 month period and whilst initially being told I didn't have PCOS I was eventually told that I did have it! (I told you it was hard to be diagnosed and I still don't understand why it didn't show up the first time!) I was also sent for a vaginal ultrasound which isn't particularly pleasant I must say but this showed that I had about 15 small cysts on my ovaries.
After I was diagnosed I then went back to the doctor to discuss treatment and ways in which I can try and help manage the condition by changing my diet and lifestyle as apparently this can also have an affect on the condition. I was prescribed the pill again, although this time it was Cerazette due to some other health problems which meant the combined pill wouldn't be suitable. He also advised me on eating healthily and to try and give up smoking and although I succeeded with the first unfortunately the second is a much tougher battle to fight and I'm not ready for that one just yet! (I think the smoking part was to do with the risks of getting diabetes if you have PCOS though rather than the condition itself. Still not great though I admit!)
The pill itself is supposed to help regulate your periods and make them more manageable and possibly even stop them altogether with this one and it can also help to regulate your hormones which means some of the other symptoms like acne and excess hair growth become less of a problem too, although luckily I never really suffered too much with those things anyway.
There are other treatments available too which I haven't explored yet and I know that should the time come that I want to conceive I may need to get extra help as it can be very difficult if you suffer from PCOS. I believe that metaformin is often prescribed to help with this but to be really honest I'm not too sure what the drug actually does! And obviously, more direct fertility treatment can be an option if you can't conceive naturally.
Personally my experience with the new pill hasn't been too great so far. It went ok for the first few weeks but then about 5 weeks ago I got my period as normal and it still hasn't stopped which is extremely annoying, frustrating and expensive too! (I'm sure the Tesco clubcard people must wonder why I buy sanitary towels every week I go there!) I am going to give this more time though as the doctor did say it is a side effect of the pill and that it will hopefully stop eventually but I will be going back very frequently if it doesn't to see what else can be done! I already have iron tablets which have made me feel less drained and the bleeding is nowhere near as heavy as one of my periods but it is still definitely bleeding rather than spotting and having to wear sanitary towels every day for over a month is really becoming tiresome now!!!!
In conclusion I would urge anybody that thinks they have the condition to persevere with their doctor to try and get diagnosed and this actually goes for anything really. I think it is all too easy to accept the first opinion you are given and to take some pills which hide the symptoms but there is often more benefit in pushing for a proper diagnosis because then you can take real steps in sorting the problem!
I hope my first review was ok and you enjoyed reading it. I would certainly appreciate any feedback on the writing or the subject matter. I don't actually know anybody else with the condition so it's nice to know that I'm not the only one who experiences these things!
Well , what can I say about Pcos (polycystic overian syndrome.) It all started not long after my tenth birthday. I remember being at home and going to the toliet to discover that I had started my periods. After running in the living room shouting oh no look am I going to die my mum calmed me down explained some stuff and got me sorted. At that time I was underweight and under height for my age. After having my first period for 2 weeks and quite heavy my mum took me to the gp who said although it was uncommon to start heavy periods it was not a huge problem. Within two months of starting my period my weight ballooned despite no changes to my eating or exercise patterns. I was suddenly having to get clothes 1-2 sizes bigger for me then normal along with wearing sanitary towels and having horrible cramps every month. After 4 months of heavy periods and increased weight and 3 of 4 visits to the gp with "children often gain weight during growth spurts" and "keep making sure she does exercise and eat less bad foods" my mum done some "googling" heavy periods , unexplained weight gain kept making Pcos pop up. Mum even brought a book or two on it. She finally went to the gp with page fulls of printed evidence from the net and spoke to him about he finally agreed (i think to keep her quiet) to send me for a scan. I went for a scan and instantly the person doing the scan was able to show us (me and mum) the multiple small cysts on my right ovary. I was then refered to a gynecologist who done bloods and confirmed I did have pcos . My level or testosterone was elevated the scan confirmed it I also continued to gain weight. I was told there was not much they could do but the best thing was to keep my weight as low as possible. Being 10 and half and being on your periods having scans and blood tests being very confused was hard enough let alone being restricted with food which in the past was never a huge problem was quite hard but I dealt with it with support from family and friends. Just after my 11th birthday I could barely walk from the cramps in my lower right belly , i was vomiting and rolling about in pain , my mum called the doctor out who called an ambulance thinking it might be appendicitis I spent the next 4 days in hospital on a childrens ward (Where staff knew barely anything about pcos) on morphine and having scans and blood tests. My ovary was just swollen and it was a very pain ful period. After that my gp and gyno decided going on the pill was the best bit , northesterone work ed for a short period of time and since then to now (just turned 18) I have jumped from different strengths of northesterone to the mini pill to micro pill to the depo injection and all have worked for short amounts of time before being fairly ineffective. Pcos has caused me become obese , be extremely hormonal , have 2 more hospital stays with pain ful periods and ovaries and loss of blood . Some people can also suffer with excess hair , acne , depression and infertility right now i do not think about weather i can have kids or not in the future so many people with pcos do have children and some struggle but I am too young to worry about this yet. I am now taking 3 northesterone a day to help with my periods but i know its some thing i am going to battle with for quite some time. Doctors find it quite hard to deal with the condition because of what they know and because of my age. I use various support forums on the net to talk to other people with this condition , i take co-codamol on prescription for the pain from my periods. As the years have gone by i have changed to doctor who really seems to care want to help. I am waiting to be re-refered to another gyno who may be able to help now i am a bit older. Pcos does not have to take over your life. If you can control it with the help of your doctor and things you can do yourself like keeping your weight down ( i am now at slimming world) taking your pill (if you take) at the same time each day and generally look after your self then you can manage with this condition. I have managed I work full time now at a nursery and go to college some times its hard and stress full especially as my periods can last upto a month at a time or more but you do learn to deal with it I hope people can read my story and realize even at a young age it does happen and you do deal with it its not some thing you need to be frightened about if you have it. Also not every one has the same symptons to the same degree if at all with PCOS i know a couple of people who are underweight with normal or no periods with PCOS it have a variety effect on everbody. Just because i suffer with my periods and weight does not mean some one else with pcos will , they might no have it , they might have it worse you just take a breath do your re search and find what works best for you. Thank you for reading my story!
In 1992 after suffering a very irregular menstrual cycle for a number of years I was encouraged to go along to my doctors to try and find out the cause of this. At this time I had also put on weight suddenly and started to experience hirsutism (facial hair). I was referred to a gynacologist who advised me that I had Polycystic Ovary Syndrome and told that with this condition I would probably never be able to have children! As I was only 20 yrs old, single and kids weren't even on my radar I remember being concerned but not deeply upset - strange!
However I went on and met my husband in 1994 and told him almost immediately that if he wanted children then the relationship was going nowhere. He accepted this and as I couldn't fall pregnant I did not use contraception. I began to feel unwell in Aug 96 and to my total disbelief I found out I was pregnant and my daughter was born the folllowing April! However during the next 5 years I began to put on more weight and the facial hair began to get worse. My periods were not as irregular or infrequent as I had used contraception since my 'surprise pregnancy'.
In 2000 I had began to get really down about PCOS and had been back and fro to the doctors and decided to take the matter into my own hands. I joined a gym and lost some weight although I could never seem to reach any targets that I set. I tried every diet you could think of and often ate very little to find that the weight would continue to pile on. I also started going to a beautician for electrolysis which got rid of the facial hair.
In 2002 we decided that we would like to try for another child and I stopped using contraception. It happened unexpectedly once before who says it cant happen again was my motto! However, after a year of trying on our own I went to my GP who was extremely sympathetic. I was referred to a gynocologist again and the PCOS Clinic at my local hospital where my husband and I had to undergo tests. Everytime I attended I was weighed and I was advised that losing weight would assist me in falling pregnant - if only it was that easy. This is one of the most frustrating parts of this illness that people assume that you are not making the effort when I knew in my heart I was trying 110%. Finally I was told that as my husband and I had a child together that there was nothing they could do for us and that I wasn't eligible for IVF. However they did suggest trying metform which is often given to people with PCOS to stabilise the condition and in some cases improve it. I tried this for a year and after having no effect whatsoever I stopped the medication. By this time it was January 2005 and I was preparing to move house.
Obviously I had other things on my mind after the move and hey presto in May 2005 I found out I was pregnant again!! My second daughter was born prematurely in January 06 as I had pre-eclampsia which relates to high blood pressure. Since then I have had to continue with the BP medication as this never stabilised and this can also be related to PCOS.
Eventually when I turned 35 yrs old I decided enough was enough my weight gain was continuing and I was approaching (if not going over) the 13 stone mark. I joined a slimming club and in addition to this I joined a gym which I was going to at least 3 times a week. The maximum I lost was 10lbs which I found extremely difficult. At the same time my beautician was going on maternity leave and I was struggling to find someone locally to replace her. After researching PCOS on the internet I found the Verity website which offers a lot of advice and information to people with this condition. It was reading through this site that I discovered the importance of having a regular menstrual cycle and that medical conditions such as high blood pressure, diabetes and heart problems have all been linked to PCOS sufferers.
It also became apparent to me that individuals who were diagnosed with this condition, like me, where no longer told to go away and deal with this on their own. I felt that there was more options available to me, since I was first diagnosed, and I decided to go back to my doctor for further advice. This was the best decision that I have ever made and the main reason why I have added this review. My doctor was extremely sympathetic and for the first time I felt that my opinions mattered and were taken seriously. He made the decision to refer me to a gynocologist once more and as I felt this was my last opportunity to receive any help I made the most of the appointment that I was given. Once again I was prescribed metformin, I was also encouraged to continue with my exercise regime and to eat a GI Diet (probably the only one I had never tried!). The gynocologist also referred me to the laser clinic at my local hospital to see if I would qualify for this treatment on the NHS for the hirsutism.
I took the metformin for over a year and when I didn't see any real benefits in continuing with the medication I stopped taking it. I have continued with the GI Diet and I feel that this has gave me the best results. I knew I had lost weight recently as I had gone down from a size 16 to a size 14 and although I try and avoid weighing myself as I am often disappointed my nose did get the better of me! To my absolute joy I am now 11stone 12" - which I haven't been in years and I haven't felt I have had to starve to lose this weight!! In addition to this my assessment at the laser clinic was so successful that I qualified for a course of treatment. To top this all off for the first time in years I had my blood presure taken and it was normal!! I know that there are many women who have a very different tale to tell. I'm been very lucky in the support I have received from my doctors and I feel very blessed to have 2 beautiful kids. For the first time in a very long time I feel that I am happy to be who I am - it hasn't been easy but sometimes the hardest things to come by are well worth the wait!! (so my mother kept telling me throughout the yrs!!). I'm never going to get rid of PCOS but I have finally learned how to live with it!! If I could give any advice, and I dont give this lightly, it would be that if you are not happy with any aspect of the treatment that you are given by your doctor then find one that you are!!
I was diagnosed with Polycystic Ovarian Syndrome (PCOS) when I was 17/18 years old. In 1998 most GPs weren't aware of the condition or how to treat it, in some cases this is still true 11 years later although the wider availability of the internet has opened up a wealth of resources for both patients and GPs.
I remember the Doctor telling me that I had a condition that meant it was unlikely that I would ever have children or a normal menstrual cycle and that it would probably be best if I had a hysterectomy! He told me what the condition was, but I wasn't really taking any more information in after that bombshell.
I went home and did some research on the web and there was a lot of information about PCOS. I returned to the GP the following week armed with my research and obtained a referral to a gynecologist.
Polycystic ovary syndrome is the name given to a condition in which women with polycystic ovaries also have one or more additional symptoms. Polycystic ovaries describes ovaries that contain many small cysts, usually no bigger than 8 millimetres each, located just below the surface of the ovaries. These cysts are egg-containing follicles that have not developed properly due to a number of hormonal abnormalities.
The main symptoms are:
Irregular menstrual cycle, causing infertility issues
Weight gain / excess weight - particularly around the middle
Hirsutism (excess hair)
Dark patches of skin
There are many other symptoms, and not all will affect everybody who has been diagnosed. Polycystic ovaries affects about 20% of women, whilst Polycystic Ovarian Syndrome affects about 5 to 10% of women.
There are many resources available on the internet, there is a UK charity called Verity which was set up in 1997, plus there are many others. There are also many books on the subject, which give advise on medications, supplements and ways to improve your health and the condition, I personally find the books written by Colette Harris to be very informative.
Several studies have been conducted over the years and there are many medications that doctors prescribe to assist symptoms. Personally I have tried quite a few and found that none have helped; the only way I am able to alleviate my symptoms is by eating a low carb diet and get lots of exercise.
There are many resources available if you have been diagnosed with PCOS or think you have it. It isn't a nice condition and it can be very embarrassing, however it is very common and becoming more so. There are things out there that can make it more manageable.
I always used to think if a disease wasn't life threatening then it could be lived with. An incredibly naive view of a then teenager. That all changed when I was diagnosed with PCOS at 19. Rather than list what it is I've written this as what I've learnt.. it might be helpful it might not.
What have I learnt about PCOS? In no particular order
Insist on a blood test to monitor your hormone levels initially - there is a characteristic blood pattern
Ask for an ultrasound of your ovaries if it's not offered - much more common these days with increased knowledge - if they don't think it worthwhile doing ask them why
NHS waiting lists are loooooong. This is the most frustrating part. You wait for investigations for diagnosis then you wait for fertility treatment (if you want it)
Exercise - the only way I can control my symptoms it helps to alter your metabolism
It's actually a metabolic disease (shocked me too when gynae consultant told me that
Seek support from patient groups like verity to know you're not alone
If you don't ovulate and don't intend trying for children then try the pill it takes a while to find the right one but it can help reduce some of the symptoms. Don't give up at the first one they put you on. Perservere!
GI diet can help to control weight and even if you are not overweight it can help your metabolism
I've been through fertility treatment I shall post my review of that elsewhere. If you are trying to conceive good luck and keep positive.
I was diagnosed with PCOS at the age of twenty four after I had been pestering my doctor for ten years previous to that. I have always known I had a problem but my doctor put my nearly non existent periods down to me growing up in the teenage years and then stress in my twenties.
It was only after me and my husband had been trying to start a family for two years without success that my GP started to listen and referred me to a specialist.
With a few hours of meeting my specialist he had confirmed that I has PCOS polycystic ovary syndrome, this is something I have researched fully and I feel that is it something that should be shared as this actually effects up to 70% of women.
Not every woman effected notices they have the condition, it only comes to light if you have problems conceiving or really bad painful periods. So this may be of interest as PCOS can be the cause of many things such as obesity, acne and excess hair.
WHAT IS PCOS
Polycystic ovary syndrome (PCOS) is a condition that affects the ovaries, basically the ovaries are larger than they should be as they consist of several cysts.
One or both ovaries can be affected, the condition occurs when small follicles from on the ovaries, the cysts are formed when you release an egg every month. Usually the egg travels from the ovary to the uterus to either be fertilised or dispersed of, this then results in your monthly periods.
With PCOS sufferers this does not happen and the egg stays attached to the ovary and forms the cysts. If you do not have a period this is because you have not ovulated and the egg has not been released.
Many women with the condition suffer in silence without realising they have the condition, so here are a few of the many symptoms that indicate you have polycystic ovaries.
Irregular or absent periods is the most common symptom, I only got my period every six months and it would last for up to six weeks. These were very heavy and painful to the extent I would have to take a week off of work, since being diagnosed four years ago I have got medication that has helped make my periods manageable, so I can go about my day to day life when ever they do make an appearance.
Facial and body hair is another prime symptom, this can affect your chin, upper lip, fore arms and abdomen. As I am very fair haired I have not suffered with this problem, but suffers with dark hair can have a problem. There is nothing to do about this, but you can start bleaching, waxing, plucking, electrolysis and even to the extent of laser hair removal.
Acne can flare up on your face, if you have never suffered from spots then this maybe a sign of PCOS, but doctors will not diagnose the condition for have acne alone.
Weight Gain / Obesity is the major factor in my opinion, I was not obese but I certainly gained weight. I put on four stone in the space of two years and I was not doing anything I had not done previously, not matter how many diets I tried I could not shift the weight gain. After finding out about PCOS I realised this was down to my body becoming insulin resistant, therefore my body started to store fat instead of the sugar. There are steps to reduce your weight is was given medication (Metformin) to stop my body storing fat and therefore my weight dropped back off, I am not a small as I was before I gained the weight but I am well on my way.
Infertility is a major PCOS symptom, this is down to the fact that many with the condition do not ovulate as the eggs are not being released, many women with the condition can conceive normally. In my case I have been trying for six years and nothing but if this is the case and you can not get pregnant easily then steps can be taken in the form of medication and injections so stimulate the ovaries, with the help of medication you increase you chance up to 60% of conceiving naturally.
Being diagnosed was a major hurdle for me, as the doctors did seem to care. So when I finally found out it was great so I could say I told you so, to those who would not listen and palmed me off with pain killers.
Being diagnosed is very easy I don't understand why it didn't happen for me years ago. It was all done through a few simple blood tests and an ultra sound scan.
The blood tests were all taken at the same time, I was tested for the amount of male hormones present in my body (I did not even know women had male hormones), Glucose levels and my thyroid was also tested.
To check to extent of my ovulation problem I had to go and get tested every week, this was to check if I had changes in my female hormones, If my levels changed it meant I was able to ovulate. I never did have a change so this determined I didn't ovulate so my specialist could hit the problem head one.
Lastly I was given an ultrasound scan, to check the full extent of the cysts on my ovaries.
Being diagnosed was simple it was done in the space of a few hours at the hospital, as I had been referred to a specialist they dealt with it quickly, but if you have to have blood work done at you GP's surgery this can take some weeks and the appointment for the scan can take up to six months.
THINGS TO DO TO HELP
There are many things a PCOS sufferer can do to help with some of the awful symptoms associated with the condition.
The contraceptive pill is the best way to stop these symptoms, as this adds certain hormones into your body this will regulate periods and help with things like weight issues, facial hair and long periods. In my experience it made the whole thing manageable but if you are trying for children this will not help obviously.
Trying to keep a healthy weight is advised, you can get medication to help with weight loss but you may need to implement healthy eating and exercise if this is something you don't to normally.
If you are trying to conceive doctors will not give you medication of operate if need be, if you are over weight so this is something that needs to be done before you can do anything.
If you are trying to conceive and you have been tested to determine the full extent of the problem, you are then open to many other options that may help if the weight loss and healthy diet didn't help.
It is common for doctors and specialists to make you wait 2-3 years before assisting with fertility medications. I waited and now I have been pursuing my other options.
My first treatment was a drug called Metformin, this is used to reduce the male hormones and improve your body's intake of sugar. These should increase the chance of ovulation by up to 90% and regulated periods, so you can conceive. I started with 100g a day but as time went on I was put up to 850g a day, I felt like I was rattling and the side affect were awful, I had headaches, loss of appetite, sickness and upset stomach form the minute I started taking these, after a few weeks the side effects did subside but after 9 months this was not helping.
Ovarian drilling is an operation that is performed under general anesthetic, here your ovaries are burned with a small laser in the hope that they will react and start to work unaided. During the operation surgeons may clear your tubes and removes cysts, with many women this is all it takes to get them ovulating again. I have had this procedure twice and both times it has been unsuccessful, now I refuse to do it again as my ovaries already have scaring from previous attempts and if they are scared there is lass chance of them releasing eggs.
The next medication was Clomifene, also know as clomid this is used to stimulate your ovaries and is highly effective in making you ovulate, These were taken for five consecutive days once a month. These could only be taken after a blood test to check you were taking then at the time you are due to ovulate.
Clomid is highly effective in making you ovulate, but you run the risk of multiple pregnancies. Unfortunately this has not worked for me but seems to make me ovulate. Your doctors will only let you take a few courses of this mediation before moving you on to another method.
Gonadotrophin injections are used to give direct stimulation on the ovaries, also helping you to ovulate. With this you are required to have daily injections to increase your chances of conceiving.
If any of the above treatments do not work for you, some times they can be used along side other treatments, for example clomid and metformin combined have a really good success rate.
I have been on all of the above treatments over the past four years, it is basically trial and error and a very long waiting game. If these all fail for me I have the last option of IVF, which is a route that can be very costly and the success rate is not fantastic.
I was only diagnosed after I had trouble conceiving so the doctors kept me hanging for years when this could have been controlled many years earlier, with a simple blood test or scan. I have now been trying to conceive for over six years without success, so I now have to pursue other avenues as many of the treatments mentioned above have failed.
It is said that PCOS can lead to infertility, but don't be put off by my experience as I have known many fellow sufferers to go on and conceive perfectly healthy children. If you are not in the market for children yet than PCOS can be controlled very easily with medication, your first hurdle will be getting diagnosed.
So if you are having trouble conceiving go and get tested for PCOS, if you are suffering from any of the symptoms outlined above then this maybe the possible cause, you don't need to be trying for children to get help. I know a few women who have decided against kids and they just get help to regulate periods and help with weight issues.
PCOS is very different in every woman, on the outside you would not notice a thing with me, I am not over weight, hairy or spotty but I just don't ovulate. Other women seem to react well to medications but suffer with weight and hair so it is swings and round abouts.
If this review has enlightened or helped anyone in anyway then it has been worth the three hours it has taken me to write it, I feel that this is a condition that is over looked which is a shame as so many people suffer with it being undetected.
I was finally diagnosed with PCOS 6 months ago. It took 4 years to be diagnosed. My periods have always been irregular (2-4 months between them and lasting around 30 days), doctor kept saying they settle down in time. I only realised it was more serious when my boyfriend and I decided to try for a baby and after a year of trying... nothing.
I did some research online and had most of the symptons of PCOS (Acne, oily skin, Irregular periods, Depression, Pelvic pain, Infertility, Weight gain, Hairitus (Unwanted body hair!), High blood pressure and cholestrol, Thinning hair, Sleep apnea). The only one I dont suffer from is weight gain, im actually underweight.
Not much is known abot PCOS but it is belived that it is caused by the level of testostrone (male hormone) being to high. It causes the ovaries to be enlarged and at the name polycystic surrgests, many cysts on the overies.
There are many long term affects to PCOS, including type 2 diabetes and infertillity. In my case, the overies never release any eggs so its impossible get get pregnant without medical intervention.
There are a few medications that can help with the symptons including the pill dianette.
If you are concerned you might have PCOS I would recommend going to your GP and mentioning PCOS and all your symptons. There are still many GP's that aren't aware of this (took me 4 years and 4 GPs before being refered to a specialist). If the GP thinks it may be PCOS they will take blood tests on certain days in your cycle and if an abnormality appears you may be sent for and ultrsound scan to see how bad your overies are.
This is a horrible thing to suffer from but you get on with it because at the end of the day, you could suffer from ALOT worse than this!!!
for more information please visit www.verity-pcos.org (this site has given me more information than any doctor iv spoken to. The boards are full of fellow sufferers)
I have had my suspisions for a few years now due to reading a lot of information in magazines, but 5 months ago, I was officially diagnosed with having Polycystic Ovarian Syndrome.
What is it? I hear you ask. Basically about 20-25% of women have it, but most dont even realise this. It is a complex which effects the ovaries, making them larger than normal and disallows them to develop properley. Eggs are rarely released for reproduction because of this, which means lower fertility than a "normal" woman and there is an hormone imbalance (more testosterone produced than usual).
This is followed by other problems/symptoms as follows:
*Acne (especially around the jaw area)/ oily skin
*Hairitus (Unwanted body hair!)
*High blood pressure and cholestrol
Gladly I only mainly suffer the first 4 in the above list. You dont have to have every symptom.
How did i know i had it? I visited the doctors about 2 years ago with my suspicions as something had never felt right. He sent me for an ultrasound test. I Had to drink approx 3 pints of water to fill my bladder, to enable them to see the ovaries clearly. I didnt drink enough water and they could not see anything so they had to do an internal "ultrasound" instead. The results came back as abnormal but my doctor brushed this off, saying I didnt need to do anything. I went home feeling a bit disappointed that they couldnt do anything about it, it can not be cured, but symptoms can be controlled. I returned to the doctor about a year later who did a blood test to doubly confirm that I actually had the condition. This time he sent me for an appointment at the hospital to throughly discuss this. At 9 stone and 5"5 she told me this was a perfect weight but to maintain this weight as any weight gain could cause diabetes due to over insulin production.
I was prescribed the contraceptive pill "Dianette". This can be used only by people with bad acne or PCOS. It helps to rebalance your hormones, stop any male hair growth patterns, and acne. The only bad thing is, it can have side effects of depression and weight gain which are both symptoms of PCOS in themselves !! I have been taking it for 4 months now and my acne has just about cleared up (it wasnt really that bad but there wa always at least 5 spots there!). It usually only takes 2 weeks according to doctors but it took miles longer than that for me. I havent gained weight (only a couple of pounds over xmas due to chocolates!), i have only had the usual depression which everyone gets now and then, but if anything the pills make me feel more confident in myself. My hair seems to have gotten a little thicker and grown faster than usual too! If you suffer from hairitus, apparently the pill takes about 6 months to begin to work on this. The pill also doubles up as a contraceptive too which cant be bad !!
Its not a nice condition to have but if you dont smile, you will only cry.
What is polycystic ovarie syndrome, also known as pcos, well this is the question I was asking myself when I was diagnosed.
This is a very common disorder in women and generally comes to light when you are trying to conceive, Women who have already been diagnosed with PCOS may not be too surprised when they have fertility problems. However, a number of women may not even realize that they have PCOS until they start trying to conceive. While 3/4 of women with PCOS do have menstrual problems, 1/4 do not. In these women, perhaps they have always had regular periods but never realized that they were not ovulating. Others may have had the occasional irregular period, but felt that it was nothing to be too concerned about, assuming a skipped period was due to stress. Regardless of this, some women will only learn of their PCOS condition when they are investigated for infertility problems.
The common symptoms of the disorder according to experts are not related to one another, at least at first. The first tale sign is the loss or irregular periods, women with PCOS may also suffer from acne, excessive hair growth either on the face or body, loss of hair, infertility, and in my opinion the worst symptom is WEIGHT GAIN. Of course, every woman is different; while one woman with PCOS may experience all of these symptoms, another may experience just acne and irregular periods. Getting a better understanding of just what the symptoms of PCOS may be will help you recognize whether you yourself suffer from it.
Doctors are reluctant to diagnose PCOS, I have had this problem for years and it was only when I refused to go back on the pill, as I was trying to conceive. That this problem was investigated, by my gynecologist. Once I got the referral form the doctor it only took a short time for the specialist to diagnose this. I was quite mad as all it actually took was a scan which only lasted 2 minutes and that was it the problem was detected.
Once I was finally diagnosed I stated to ask the How, why, Will I, questions. I have researched this disorder extensively and I now feel I have understand the functions of PCOS.
PCOS is due to irregular or absent ovulation, it is not surprising that it is a common cause of infertility in many women. some women with PCOS will ovulate normally, some will ovulate less frequently, meaning it will be harder to conceive but still possible and women some will not ovulate at all, meaning that they will have to go through fertility treatments.
PCOS does have different severities so if you are diagnosed you will have to go thought the long process of illumination. Firstly it will depend on what you want out of life if you don't want children or you feel you are not ready for children then this disorder can be controlled with the common contraceptive pill. As this will regulate your body this is the easiest way to cope with PCOS and symptoms.
If you are one of the many women trying to conceive, you will need to make regular trips to your gynecologist for blood test ect. Firstly they will prescribe you metformin with is a drug used in diabetes for insulin resistance, when I first started this I nearly had a fit as the chemist tried not to charge me as it was a diabetic drug. I quickly came home and researched the drug. YES this does sound weird but it is proven to help with PCOS and infertility problems. Metformin does have side effects like headaches, dizziness, sickness ect but this does subside after a month of so, you will start on a small dose of metformin then it gradually increases. Weight loss is increasingly common in women on metformin as it can suppress hunger and make food taste nasty, so you don't want to eat.
If you have not conceived within a certain time frame specialist will then prescribe clomid which is taken along side metformin, to help conceive. This is as far as I have gone with the fertility side of things so I just have to wait and see.
I have heard many success stories of women with PCOS conceiving, some in early stages and some in the later stages of treatment. It could take month and it could take years but you must persevere with medications ect.
PCOS does get me down but, now that I have a better understanding of it, I am able to cope quite well, my lifestyle has changed slightly but not a great deal, I have managed to lose weight and keep it off, it was things like regular dog walks and a healthy ish diet that helped, Oh and the metformin helped with my weight loss to.
I do hope people will find this useful, and if there is anyone that needs a little more information on this subject, I will be happy to help if I can.
I was diagnosed with Polycystic Ovaries in 1999, and since then I am been surprised at the amount of women who live with this condition or Polycystic Ovarian Syndrome. Latest research states that approximately 10% of women in this country of a child bearing age have the condition. Worryingly though, a lot of women go undiagnosed, and the condition has been said to have a linked increased risk of heart disease.
==WHAT IS PCOS?==
First of all, it is one of the major causes of infertility, and in my case that is how it was diagnosed. I had been trying to get pregnant for 4 years, and on seeing a specialist, his tests confirmed this condition. The first indication is not surprisingly multiple abnormal cysts on your ovaries. Generally, these cysts are harmless, and are filled with fluid, along with undeveloped eggs which them fuse themselves onto the ovaries.
The main symptoms are excessive hair growth on the face/body, obesity, irregular, or in my case absent periods, acne, high cholesterol, insulin resistance and decreased libido, however the list does not stop there. For most of the last 18 years, I have battled with my weight. It seemed to happen overnight, I went from being slim and eating well to being overweight and no matter what I did the weight would not come off. When I was diagnosed it all made sense. There was finally a medical reason, and I wasn't just greedy. The medical explanation is - Because insulin production of the pancreas is thrown off by the Insulin Resistance, the body struggles with the conversion of food to energy and this in turn leads to an increase in the amount of stored fats. When glucose cannot enter the cells efficiently it remains in the blood stream, causing elevated blood sugar - whereupon it is sent to the liver, which converts it to fat and stores it throughout the body. When the body takes in calories, it has a choice of either burning those calories for energy or converting them to fat and storing them. In patients with PCOS, Insulin Resistance encourages the storage of fat and the production of excessive amounts of testosterone.
==WHAT CAUSES PCOS?==
In a nutshell it is caused by a hormonal imbalance, but as with most things it is not that simple. Most suffers have low glucose tolerance and can develop type 2 diabetes in middle age. The high related insulin levels increase the testosterone, which in turn reduces the ovaries ability to release eggs, resulting in infertility. In my experience, this is also very painful.
==WHAT IS THE CURE?==
Disappointingly, there is no known cure at the moment - even the drastic step of removing the ovaries will not cure the sufferer. This is something I have thought about, but the cons outweigh the pros currently. The condition can be managed though through sound nutritional advice, regular exercise and in some cases medication (generally the same tablets that are prescribed to diabetics).
Me? I just learn to live with the discomfort and side effects. Fertility treatment enabled me to have my beautiful children. Eventually, I will probably go for some more radical treatment. At the moment, I am just trying to manage the condition.