Polycystic ovary syndrome (PCOS)

Tasneem Vallie, 4 months

hi, im tasneem and i have been suffering from this disease for about 15 yrs but was only diagnosed 3 yrs ago after i had my son. It is true that it affects fertility, causes weight gain, terrible mood swings, facial hair, depression, cloudy thinking, back ache etc, etc all of which i have suffered from. I refused to believe that i was going to live like this forever and went to every related medical specialist with no help except the advice that i have to to loose weight. Now anyone with pcos knows that loosing weight is virtualy impossible. But why? In a nut shell your body cannot convert stored energy (fat) into useful energy and with the extreme sugar highs and lows all the body wants to do is store. As you become oldere you muscle mass will decrease and you fat mass will increase faster than someone without pcos. Why? As a pcos sufferer you have a diminished progesterone (hormone) level. Progesterone is produced in the corpus luetium (whomb lining responsible for period and or after birth). Now if you're not getting a period you have no progesterone in your system. The only safe way to get progesterone in your body is by applying it to the skin and allowing it to absorb. Now there are many creams available but the only ones you really should be using is a natural cream with no petro chemical ingredients or preservatives in it. I have been using the cream for the past 5 months. In the first month i noticed that my ankles where not as swollen but when i got my period, it was the worse one ever. I am told that that is consequence of the body reaching homeostasis. Subsequently i have had my period every month that resembles a cycle and i can actually count out my cycle which i could never do before. My pms has disappeared: ie no sugar/chocolate cravings, not a single acne spot infact my skin is glowing with health and the mood swings have lifted. Admittedly i still have facial hair and i am still overweight. However i was told that this takes alot longer to regulate that your period, so i still use the cream. I must admit that i have started gyming again and have started to loose weight - slowly. I live in S.A. And the cream that i use is called naturone. For interest sake please google oestrogen dominance and check how this can wreak havoc with your system.

Courtney Pitts, 8 months

Hi, I'm Courtney. I am in my early teens and ive only had my period for nealy 2 years. I went to my gp yesturday, and i got told i have a possible PCOS. My mother tells me its not too bad, but im worried about the fertility side. I've always had the dream of being a mother. My periods were fine up until January and then they went down hill from there. I got my last period in April, and i got it really bad. I normally get them every month until April. Ive been anxious and observant, waiting for my periods. I'm getting really worried now. I'll mention that I have lost 6 kilos just after January. My mother had PCOS and then a historectamy. I hope Someone can help me. I've been worrying about my periods for awhile. Cheers, Courtney.

Louise Riley, 9 months

My sister was diagnosed with pcos after not starting her periods, I am 24 now and have just been told I have pcos too, but I had a daughter when I was 17 and a son at 19....my periods became less and less frequent over the 5 years after I had my son and now don't have them for up to 8 months at a time. I am very overweight and have been struggling for years to lose weight but haven't got very far, the doctor told me all i need to do is lose weight, I thought most people (including my sister) are given some sort of medication to help, including moeformin or the pill....I don't understand why she woiuldn't give me anything, including no help to lose weight, i feel very downheartened from my docs visit!!

liz, about 1 year

Hi Lisa. I fully understand that you are anxious about being diagonosed with polysystic syndrome. There is honestly nothing to worry about. No extreme tests. As you are still young you should try to get it sorted out as you may have problems in conceiving later in life. if you are able to nip it in the bud now so to speak then you will be fully prepared. I wasn't diagnosed until I was in my late 20's now 42. My husband and I sat down and worked it out I probably had this since I was 13 years old when I started my periods or lack of them. I so wish it was more understandeable then as it is today. I was very sporty and still go to the gym and lead a very active life having 2 children to look after plus a menagerie of animals, husband, yet I am classed as very over weight. I have had tremendous problems to lose the weight. Lack of will power doesn't help. I also have just read that pcos sufferers also suffer depression which is something I am prone to as well. I am also in the process of watching my daughters in case they should have the same problems as me with weight. My eldest daughter is 13 years old is very very sporty but even she has a lot of muscle which could potentially turn to fat should she stop the sport. I wouldn't hesitate for my girls to have a test early to diagnose if they have it. As it will make their lives much easier in the long run as I wouldn't want them to be restricted in doing what they want in life due to being over weight. Or even the potential health implications or potential fertility problems. Lisa I would recomment you definitely go to the GP and get it diagnosed sooner that later. I promise it is so straight forward. Good luck Liz

Lisa, about 1 year

Hi, Im 17 and feel rele embarassed about this whole PCOS thing. I reckon I have it as I fit the symptoms Im embarased about going to the doc's about it, and some way a tad scared What are the tests that are done to determine whether we have this?? And also, I've been consistently overweight, something that is so annoying, But I've been dieting and have had some results... Is it just harder for us (PCOS Sufferers) to loose the weight or impossible?? Love a response as this is something that is kinda upsetting me the more i think abou it, and i try to put it at the back of my mind. None of my family or friends know of this, and I dont know how to approach the whole situation!! FRUSTRATED! Lx

ROSELYNN OWEN, about 1 year

hello my name is roz.i have had pcos for a very long time now and the doctors just keep telling me to lose weight and that will help and i have not had any periods for years now andi get back pain and leg pains like you get when you are going to have one but i do not have one and feeling really bad because everyone around you is having a baby and you can not have one yet.do not let the doctors tell you the problem is your weight or any thing else because they will keep telling you that.which they are doing to me .push as hard as you can for what you want and you will get there.from roz

Kala, about 1 year

Okay im 17 and I just got diagnosed with PCOS two days ago. I am on Medforbin and birth control to help my periods along. I have to watch what I eat and excise alot. And my doctor did tell me that if I didn't lose wight I would not be able to have kids further in life. And I really want to have one later on . is there anything that I could do to help me over come this? Does anybody have any answers for me? thank you very much

SUZANNE, over 2 years

I found out I have PCOS last year after the hospital investigated pain that I was having in my stomach area etc. They believe looking back over my history I probably have had it since the age of 15/16. Whilst sat in the doctors office they told me it was very unlikely that I could go on to have children ... the doctor was astonished when she looked at my notes again to find that I had a son of 2 years old. All of you out there don't give up hope it can happen.

Toni, over 2 years

Im 24 yrs old i was diagnosed at 19 with pcos and was told i wouldn't be able to have children when in fact a couple of months later i found out i was 7 weeks preganat and now i have a healthy 4 yr old, then after having him i had to have some tests done and the pcos had gone with much delight i was happy to think it had gone. Two years ago we thought we would try for another baby then i started to get irregular periods back so i went to the doctors who run tests and found i have a much worse case of pcos then i did before so now im under fertility treatment who have told me i could have tablets to help to concieve only to found when we went back that im going to need IVF sometimes life can be so wicked

nadeane, over 2 years

Hi im nadeane im 26 and have been diognosed with pcos 12 months ago after a lot of wrong diognosing , the doctor has put me on metofurmin so i have been on those tablets for three months now i sometimes get tummy pain but cant realy feel any difference , im trying to have a baby and i have two months left on these tablets befor i go to see the specialist at hospital im not too sure what happens then , the young ladies on here try not to worry too much i know its hard but there are creams and potions to help with the excessive hair and i have friends who have hair growth beleive me its not just us ladies with pcos .

georgina freeman, over 2 years

hi my name is georgina freeman, i am 18 years old and was diagonsed with pcos about a month ago. i am 5ft 6 and weigh 12 stone 12 at the moment,which makes me a camtable size 16. I am on my preiod at the moment, which is 3 months late and always ireulgar. My mother has put me on a low gi diet, but i have been eayin whole weat carbs, now nad then. But because its neally xmas i bought some choclate adn have been eating lots of it and cant cotrol my self. Im really determined to lose weight, but it seems like its taken forever. does any1 have any advise to help me? thanks georgina

sara, over 2 years

hi i am 18 i found out at the end of last year i had polycyctic ovaries...after years of troublesome periods were i was really heavy till i was passing out. I find it really hard to loose weight and i am allways tired. They decided to send me to the hospital for a scan were i was then diagnosed i have heard nothing from them since im worried because i dont know much about it or wether i can have kids..ect ect i need to know if there is anything i can take or suggest to my docter as i am fed up:)

Emily, over 2 years

When I found out I had PCOS about 18 months ago the first thing I did was go on the internet and join forums full of people struggling with the sysmptoms and having trouble getting pregnant. I was overwhelmed by a big black cloud thinking that I would never have children, would turn ugly, spotty and hairy and would develop serious health conditions in the future. PCOS is a serious condition but my advice to anyone newly diagnosed and worried about the condition is that just because some people struggle with certain things it does not mean you will. Every case is different and I started to realise how common this condition actually is, and I mean REALLY common. Beautiful women with big families sometimes have it, it does not automatically make you an infertile hideous beast. Another point to remember that the online community struggling with the condition does not represent the whole PCOS community and that there are millions of women leading perfectly normal lives. I managed to lose nealry three stone, regulated my periods and am now four months pregnant and conceived natually. I know some women arent as lucky as me but there is nothing to say you wont be. Try not to get overwhelmed, understand that you are different and this is different for you and be positive! Read success stories instead of problem pages. For anyone finding out while they are still at school it is probably likely that at least one of your class mates will develop PCOS too. Since I got pregnant Ive know know 4 more people with PCOS that live in my town and 3 of them are pregnant! Good luck to you all :o) stay positive!

Jesamine Hopper, over 2 years

I am 23 years old have recently been diagnosed with PCOS. I have known since I was 15 that I have PCOS but the doctors would not diagnose it. I have been told by my GP that there is a high chance i could be diabetic because if the PCOS but having been tested for this I have been given the all clear. My GP has also advised me that a woman should have at least 2 periods every 12 months in order to clear out the eggs that lay dormant as if these are left in the body over a certain time they can become cancerous. I have not had a period for 5 months now so in a months time i will be going back to my GP and they will give me some sort of drug that will 'induce' a period and from there on i will go back every six months to repeat this. If you have not had a period for a long time i would suggest going to your GP and requesting something similar to what my GP has offered.

gemma, over 2 years

hiya i have been told from a doctor in the NHS hospital that i have recently been diagnoised with polycystic ovaries and i'm worried about not been able to have children this does not run in my family though so i don't know how i got it i'm still waiting for more news from the NHS i just wish that i had not been told that because it has made me very upset about the fact. I'm only 16 yrs old i've told some of my friends but they don't really understand so it's like i have not got anyone to talk too about this but when i seen this sight it kind of scared me when i read that you can put on weight because i have had problems before not being able to lose any weight and espeacially the facial hair. but this is what i really don't understand i have had hairs on my stomach the very bottom of my back and other places and my periods used to come regulary i have not had a period for about 2 month's now but i have also had a really big problem with my sweat glands and was going to get an operation but they cancelled it when they found out i had polycystic ovaries because they said that the sweat problems could be related to the polycystic ovary syndrome and they told me that medication should cure it but when i read through your comments i don't feel like taking any medication that is prescribed to me becuase if it gives you all these problems then when i go to college and end up in tears people in my class will ask me what is the matter as well as the teacher i'm also in placement in a school i'm working with y1's what if it starts up when i'm there? i'l be sent home and that will effect my learning in obsering children and time of college and placement is not what i need there are so many questions going through my head and i don't know what to do about it i have kepy it quiet in college i have only told 4 people in college about it they all felt sorry for me at that point i could of burst into tears i felt so upset and i don't think my mam and dad understand becuase they didn't know what to say to me and couldn't explain it either and i would love to talk to someone who has had this and had all their dreams for a family destroyed becuase you are the only people who i can talk too who will understand what i'm going on about i only got told this on the Thursday 6th December 2007 i would really like someone to talk to me about it, it would be mostly appreciated. yours sinserely Gemma Thank You for finding time to read this.

sharma, over 2 years

I am 15 years old and was recently diagnosd with PCOS. I had a extremely heavy period and had to go to hospital. I havn't had a period for 9 months now. I had blood tests and a ultra sound scan where they diagnosed me with PCOS. I get stomach aches from the tablets im on ehich make me want to be sick and stomach spasms. I am olivy skinned and quite hairy already and am worried about the extra hair growth and putting weight on. I am also worried about infertility. I am in alot of pain some days and have mood swings. As a teenager approching my exams it is not the easiest to cope....i would apprecaite some advice or some similar stories about what happens to you.

Heidi Byres, over 2 years

Hello there! My name is Heidi I am a student Nurse in Bournemouth and I have had PCOS since I was 15 now 26. Over weight: with most weight holding on to the middle!! I suffer from terrible moods, anger, tearfull and some very dark depressive days which are terrible. I have been given Metformin to try although this really affects my tummy and I end up on the loo!! I have a period unexpectadly (maybe 3 times a year since on the metformin: but I must remeber to take it!!I do have days when I feel sick and have to hold if off) I have to shave twice a day on my face, where god makeup and it is not to noticiable: but my therapy is to talk to people about it. My boyfriend has to put up with my moods which he just ignores me!! I hope that I can help anyone please do email me, be great to speak to people with similar problems, or of any advice you other guys may have, thankyou. Love heidi

Joanna, over 2 years

I had to challenge my doctors who originally told me to lose weight and excercise. PCOS is a chronic condition and until you have the symptoms under control keep going to your doctor. I can recommend a book by Colette Harris which has been my bible. It is called pCOS diet book and is very informative. Dont be afraid to gp back in and discuss with your doctor and ask for a referral to an Endocrine specialist. There are 2 really good websites for pcos one is called Verity the other is called soulcysters google them and start surfing and making contacts. You are not alone and this condition is not something that your GP can be an expert in so ask for a referral to someone who is and who can help. Hope this helps!!

Rhoda, over 2 years

Hi my name's Rhoda, I'm 28 and have just been diagnosed whith PCOS. My GP has put me on Dianette, it's only been 6 weeks but I'm still not seeing a diference. I stopped taking it for a week and waited for a period, still nothing! It's been 3 years since I had one. Some days like today I'm in pain all day. I keep getting new symptoms and I'm not sure if its down to the PCOS or something else. I have mood swings from hell. I'm not sure when the symptoms first started, I know I haven't always been like this. If anyone can give me some advice it would really be appreciated.

Andrea Pannell, over 2 years

my name's andrea, i'm 21 years old. i was diagnosed with pcos when i was 16 after 5 years of being told that having one period every 2 years was normal. i was told i may not be able to have children. i have bad body and facial hair, not helped by the fact that i have dark skin and dark hair anyway. i am overweight and find it very hard to loose weight. my mood swings are aweful for myself and my boyfriend, though he is so understanding.i am in alot of pain around 50 percent of the time. i have now not had a period in around 2 years, dianette was not working and my new drug isnt either. i am struggling to cope with the symptoms and i feel it's getting harder. i want to be able to have a baby but i cannot conceive and i'm struggling to get any decent advice on how to increase my chances.

Sarah Wilson, over 2 years

Hi, I was diagnosed with PCOS around 12 years ago (aged 18) just after the birth of my son. I quickly developed all the symptoms of PCOS minus the Acne (for some reason or other it is something that I never got). After moving away from my original area of diagnosis I was referred to an Endocrinologist at another hospital, where I began taking Metformin, Spironolactone and Dianette. After 12 months of taking numerous medication the symptoms became worse. I was tried on Provera to induce a bleed as I had not had a period now for over 6 years. Again this had no effect, to make matters worse my local GP would not prescribe the medication that the specialist prescribed which meant a fortnightly trip to the hospital for the meds which was inconvenient to say the least. After going through this for another 12 months with no signs of the symptoms getting better we moved area yet again. Another 12 months on and I decided I needed referring back to a specialist at the new hospital. My first visit to the new GP who was to refer me on was quite a shock... his first words were... "I think you have been mis-diagnosed"... sent a letter to the specialist and took more bloods from me. To cut a long story short the new GP was somewhat right, the specialist decided that the severity of my symptoms plus the levels of testosterone were a symptom of a tumour, following investigation it was revealed that I had a tumour on my right overy that was secreting androgens. I subsequently had this and my ovary removed 12 months ago this really should have been the end of my symptoms, however 12 months on and although my testosterone levels have dropped all my symptoms are still there (severe facial/body hair, severe male pattern baldness, clitamology, deepening of voice (though this has improved) obesity and still no periods!) so I have been rediagnosed with PCOS again. Despite the fact that I have lived with the problem for so long, have a busy work and social life and have superb support from my husband, this a very hard condition to live with for a woman. I am hoping that after 12 years of living with the symptoms of this condition medication may now work that the tumour (a big percentage of the problem) has now been removed.

RHIANNON PRICE, over 2 years

I AM RHIANNON PRICE AND I HAVE GOT POLYCYSTIC OVARY SYNDROM I AM 20 YRS OLD HOPE TO HERE OF YOU SOON RHIANNON