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THE SIMPLE TRUTH about PCOS
Polycystic Ovarian Syndrome
Member Name: velissaria
Polycystic Ovarian Syndrome
Date: 23/02/11, updated on 05/12/11 (380 review reads)
Advantages: It's usually not life-threatening
Disadvantages: The GPs don't usually treat it properly
*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:
Summary: Get informed and ask for better care
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