Advice on PCOS diagnosis, please

Hi everyone, I have poly-cystic ovaries, I have bad acne (despite being 23 years-old), hair loss in my scalp, I sometimes get a bloated stomach and I have facial hair. I have also always had dark circles under my eyes, which I am not sure if it is connected to PCOS. I went to my gynaecologist at 15 years old because I had had 2-3 day long periods three times in one month (this was a one off event and never happened to me again). My gynaecologist requested a scan of my ovaries, which showed they were poly-cystic, as well as a blood test which showed a mild hormone imbalance. She told me that it was normal in adolescence to have hormonal imbalances and that poly-cystic ovaries were common and should improve in adulthood but that I should come back again if I had any concerns and briefly mentioned that a healthy diet would be beneficial. My periods are regular now so I did not go back to GP or gynaecologist. However, I tend to have severe mood swings during my PMS and was a little worried about my period flow (which had clots in it) so I googled herbal remedies to ease PMS (as from my experience, doctors would not do much about PMS other than to tell me to take painkillers). Whilst searching online, I came across the term PCOS for the first time. I read that it was a life-long condition which had no cure and could potentially lead to infertility. When I read the symptoms, I was almost convinced I had PCOS because I felt identified with many of them (as I described above). Moreover, I read online that a diet free from dairy and gluten would improve my overall symptoms. Funnily enough, I had adhered to this diet last summer because a friend of mine who is a bit of a health guru was telling me that she had cut off gluten and diary and was feeling much better and energetic. When I tried the diet, my colleagues and flatmates did mention that my skin looked much clearer and my face less swollen. However, due to the lack of scientific evidence, I went back to my normal eating habits after a few months because I was worried I would later resent not consuming dairy as it could lead to osteoporosis, etc.

Last month, I told my GP I was concerned I had PCOS because of the symptoms I presented and the fact I had had poly-cystic ovaries as a teenager. They requested some blood tests, which showed normal glucose and hormone levels and a CT scan. The radiographer told me than my ovaries had the normal number of follicles in them so I just left it at that. Then they rang me from my GP saying they had received the results from the CT scan and that I did have poly-cystic ovaries but that I did not have PCOS because my glucose and hormonal levels had shown normal. I felt quite anxious and pointed to the doctor my acne and my hair loss. She said that these were mild symptoms and that as long as my periods were regular (as well as having normal glucose and hormonal levels), then I did not meet the criteria for PCOS. My grandad is diabetic so I requested the doctor to test me for insulin resistance. My glucose levels could have shown normal because I am a healthy eater and I am very mindful of what I eat. She said that the GP surgeries in England do not test for insulin resistance and that she could not refer me anywhere. She also seemed quite annoyed about me asking questions. Again, I left it at that thinking that maybe I was being a bit of an hypochondriac or a drama queen.

A week later or so, the man I am currently dating mentioned that I am quite hairy and maybe I should go to the doctor's about it. He didn't say it to upset me and in fact, he is always commenting on what a nice figure I've got (I do exercise regularly). He didn't even know I had recently been to hospital to get my ovaries scanned or my worries about PCOS. My facial hair is not even as near as bad as my acne or my hair loss in the scalp. However, his comment made me realise that I should find out more about PCOS and not put my health in hands of one doctor.

Any thoughts on my story, please? Thanks for reading.

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7 Replies

  • A period doesnt mean you are ovulating though, I had regular (ish) periods and presumed I ovulated but I rarely did. Also cysts are only a symptom and not the cause of pcos (name is misleading and they are thinking about changing it). Have a look at the NICE guidelines on PCOS as it shows what you should expect so your GP doesnt fob you off - they are not experts in pcos so they should refer you to an endocrinologist to investigate further. Blood tests for PCOS can come back normal as well - you can be diagnosed by symptoms alone, which you have.

    They do still do the fasting blood test for insulin resistance but they dont really advertise it as it is costly for them. I was also told they no longer do it but a one blood test that shows what your sugar levels were doing for the last month, but this does not take into account what it does with sugar. As you have diabetes in your family then I would go back, can you see someone else at the surgery?

    Look at the NICE guildlines and print it out if need be as you should be referred by your GP and not just fobbed off. Good luck.

  • Thanks, Hols. I saw another doctor within the same surgery and she told me that the test they did is very accurate and monitors sugar levels over the last three months. I am moving to a different area in a couple of months so I think I will try again at my new GP surgery.

  • Yes they told me that too but I dont think they are being 100% truthful as it doesnt show what your body does with sugar which is why the glucose test is crucial as a blood test after shows how your body reacts to it. The fasting IR test costs more so they tend to fob most off with the 3 month one shows it all but I dont believe it will show IR

  • I have a feeling you are right, which is why I want to explore IR further. I eat healthily so my blood sugar levels over the last 3 months should be normal (and in fact they were) but what I want to know is whether my body has an adverse reaction to glucose straight after I consume it, which, from my understanding, would affect the insulin levels. I am no nutritionist expert but I do believe the 3 months one would not show IR unless I was stuffing myself with sugar regularly.

  • Yes I agree.

  • i have just come back from the hospital where my daughter had her scan for polycystic ovaries the person who did it said she should see the doctor as it might be but her bloods were normal any advise to calm an anxious teenager shes seventeen

  • Hi, what did the doctor say? Did they send her for any more tests? I´d say the best way to calm down is to get an accurate diagnosis and a clear treatment plan, which seems difficult to obtain from the doctors -.-

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