False PCOS diagnosis and now very confused, what should I do?

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I am a 22 year old woman.

In July 2018 I had a transvaginal ultrasound and blood tests to check my hormone levels - my symptoms had been 6-8 week cycles, heavy periods and really bad period pain. The results I got back at the GP showed that I had polycystic ovaries and high testosterone levels so I was immediately diagnosed with PCOS and put on the pill. I only stayed on the pill for a couple of months because it made me a hormonal mess.

Over the next year or so, I've always thought that the symptoms I have can be attributed to PCOS. When I go out walking, I often get a really sharp pain in my right ovary, almost as if it's trying to push out of my skin. I thought it was because of the cysts.

Recently I have found that I get really bloated and quickly full/indigestion-y. My cycles are around 8 weeks long, and about halfway through each cycle I get loads (and I mean loads) of stringy, black blood that is sometimes a bit redder coloured. This could be mid-cycle spotting, but a couple of cycles I have had huge black clots join this spotting, around the size of a 50p piece. I also don't think that these are 'periods' as I have 'normal' periods around 3 or 4 weeks after this 'spotting'.

I went back to the doctors and have had another ultrasound and blood test. All of the blood test issues they were looking for (including ovarian cancer) came back fine. The doctor told me that I actually DON'T have polycystic ovaries or any cysts on my ovaries, and I therefore don't have PCOS. He's said that they basically have no idea what's wrong with me. This has left me, understandably, very confused and worried.

I suppose I have two issues / questions:

If there is no cure for PCOS, is it possible that my initial scan was false, or have my polycystic ovaries 'cleared up', so to speak?

What could the doctors be missing, or does this just happen to some people without any reason?

Thank you for reading this and any advice will be appreciated.

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  • Posted

    The reason I ask about The Pill is because the whole point of The Pill is to reduce the cysts and re balance the hormones. So an ultrasound would not show cysts and blood tests would show improved testosterone levels.

    Re the blood clots, they are caused by extremely heavy periods, so the blood clots as it comes out. I have them too but had then more when I initially started The Pill. They eventually settled down when my Pill was changed.

    I had to change The Pill multiple times before things settled down to less blood. Your period should only come when you go onto the withdrawal pills on the sheet. I suggest seeing a gynaecologist to sort all this out. I had surgery to drain a burst cyst that was grapefruit size and had major clots for at least 2 years post it.

    A gynaecologist can monitor mood issues, hair growth issues, acne, heavy bleeding causes and spotting and hormonal imbalances. You might need to try several Pills before you find the right one. Each one might take a few months to settle things so don't give up. Your symptoms do sound very PCOS like but you're probably on the wrong Pill. See a gynae and unfortunately, this process takes patience. I was diagnosed at 17 (37 now), and I still have issues on and off. Recently I went through bleeding on the Pill and no bleeding off the The Pill due to weight lose, illness and extreme stress at the time.

    Best Wishes

    Melissa xx

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  • Posted

    The other reason for seeing the gynae is if it id not PCOS, there are other causes for your issues. Like fibroids in the uterus and so on. I had an exploratory laparoscopy to check for endometriosis, external fibroids, ovary issues etc. All of which can cause your symptoms. My left ovary is twice the size of my right is almost always covered with cysts. On The Pill, the number and size reduces. When I had the abnormal bleeding, I had an ultrasound. Almost no cysts because I was on The Pill so they said I don't have PCOS. I've had it for 20 years. No Pill, no period for me because I just grow cysts with no ovulation. Don't believe everything you hear. Get it thoroughly checked by a gynae.

    Melissa x

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  • Posted

    A lot of GPs do not know much about polycystic ovarian syndrome. Cysts on your ovaries are a symptom of the hormone imbalance, you don't have to have them. I get my hormone levels checked and sometimes they are ok and sometimes they are not. You are supposed to get tested on day 21 of your cycle, they don't always tell you that. I am insulin resistant and that is what causes my PCOS. If I avoid sugar, alcohol and dairy I can keep my symptoms under control. I have to watch my weight because I put weight on very easy, the bigger I get the more symptoms I get. I also have to be careful because I don't want to get diabetes.

    Ask for a fasting blood glucose test or a glucose tolerance test. Also ask for another hormone test and make sure you get it on day 21 of your cycle. Also get your vitamin D and B12 tested. I was deficient in both of these and taking them regularly has really helped with my periods.

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  • Posted

    PCOS is seen on ultrasound when the ovaries are enlarged in volume and contain > 10 immature follicles with no mid cycle dominant follicle - however this alone is not enough according to the Rottedam criteria to diagnosis PCOS - the GP also needs to see other criteria such as irregular periods/acne/excess hair/high levels of testosterone - if the GP correlates all the info he can diagnosis PCOS.

    However - even if ultrasound sees the above criterea its not seen as PCOS is its within 8 years of the woman starting her periods/on any hormone contraception.

    Additionally - the appearance of ovaries can change with insulin resistance - therefore if a diet has been followed and sugar reduced i have seen ovaries improve. They reduce in size and a dominant follicle can be seen mid cycle - then the symptoms should improve - this can also happen with Metaformin the medication given to diabetics. So PCOS can be fixed and it cannot be diagnosed in a teenager as hormones are going mad in puberty.

    Hope that helps Rach

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