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Is it 'normal' to have a single ovarian cyst? GP is telling me it's not PCOS...

(8 Posts)
emeraldgirl1 Fri 18-Sep-09 10:46:58

Just seen my results for scan and blood test for possible PCOS - one ovary has what they're calling a 'small simple cyst'. GP assures me this isn't a sign of PCOS and is referring me to gynae at my request, because I'm concerned about other aspects of tests - Prolactin level of 1304, just over twice the upper limit of what would be normal.

The report says 'the ovaries do not demonstrate the classical features of PCOS' - but until there is more explanation for my irregular periods, should I push for further tests for PCOS? My LH/FSH levels and testosterone were normal.

And what should I be asking the gynae for/about when I go for my appointment? Sorry - I'm hopeless at this kind of thing and just want to make sure I'm getting answers instead of being fobbed off!!

ThingumyandBob Fri 18-Sep-09 13:29:37

You could ask what the cyst is made up of and how it will affect your fertility and general health, you could also ask if it you could be scanned again in a few months to see if the cyst has grown.

They won’t be able to answer all of the questions but your questions should prompt them not to fob you off and look into it further if needed.

I would write your questions down too so you don’t end up forgetting, I’ve been to see consultants that are so busy they can rush you a bit, if it’s all written down it’s easier to stay focused.

TopSop Fri 18-Sep-09 13:39:34

I had a single ovarian cyst. A lot of cysts start life as a left over corpus luteum that doesn't dissolve back into your body - it just stays there like a little bag and absorbs fluid. You could ask the gynae if the cyst looks like this.

2ndDestiny Fri 18-Sep-09 13:53:35

Hi emeraldgirl

we have met before...

glad you are finally getting some investigations but sorry to hear you are getting a rather confusing diagnosis.

Firstly, in my opinion you do NOT need to push for more PCOS tests. I would say PCOS is now ruled out - the PCOS related hormones came back normal and your ovaries did not appear polycystic on ultrasound. The 'cysts' in PCOS are not actually cysts - it's a bit of a misnomer - in PCOS what you actually have is multiple immature follicles. An ovarian cyst (which you have) is quite different. Your irregular cycles are explained by the high prolactin. The only other reason for continuing to consider PCOS would be if you have additional obvious symptoms such as bad acne or excess hair (e.g. on your face, tummy etc.) - if these are not an issue then PCOS is ruled out.

Secondly, the cyst - I don't know much about ovarian cysts (hopefully someone who has had one can come along and reassure you, I believe they are quite common) BUT I'm fairly sure they are not usually detrimental to your fertility and they are treatable. You should be under the care of a gynie to have it monitored (which is sounds like you are) I've heard they can be a bit sore for some people.

Thirdly, I DO think you should push for further investigations about the high prolactin levels - it is important to find out what is causing this and to treat it. A gynie may not be the best person for this, ideally you need a referral to an endocrinologist and you need to make sure there is nothing amiss with your pituitary gland to cause it to oversecrete prolactin. Hopefully once that is treated, your cycle will settle down and you can start thinking about TTC.

I wish you lots of luck. I know only too well how stressful it is going through investigations and having to wait weeks to get answers, but you are getting there.

emeraldgirl1 Fri 18-Sep-09 14:23:37

Thank you so much 2nd destiny - yes, I think I do probabloy need to push for further investigations re the prolactin level - at the moment the GP's plan is to retest over ther next couple of months to see if the level goes down and if it doesn't, to investigate further. Or I am sure this is something I can discuss with the gynae just to get a clearer picture of what a continued high level might mean? Yes, it is frustrating, especially when the default opinion is that it is 'just' stress - all very well, but if that's the case then I need to find some serious ways to de-stress, and not getting a diagnosis isn't helping!

ThinumyandBob - great suggestion to write down my questions - I will do this now while they are fresh in my mind and take this along - I do tend to forget things and then kick myself later!

Thanks too TopSop - I will ask about that kind of cyst. It's not so much the cyst that bothers me actually, more this high prolactin level...

Frustrating, though I feel I am getting somewhere. A visit to the gynae can't hurt, I think? Or would others push for an endocrinologist right away?

emeraldgirl1 Fri 18-Sep-09 14:32:20

Oh, and 2nd destiny - you said only reason to push for further PCOS tests would be excess hair or acne - I DIF have 2 very bad episodes of adult acne 6 and 3 years ago, both cured by Roaccutane, but horrendous at the time... maybe this is worth mentioning to gynae though.

And as for excess hair, I never know what is excess! blush
I do get dark hairs around my upper lip and I think these have got a little worse over the years - they are kept at bay by me being a tweezing maniac and having threading 1x per month... I never thought this was a lot of hair until one day the girl doing the threading asked if I had been shaving because a few of the hairs were quite tough... I do also get the occasional dark hair on my cheek, and four or five on chin... I have no idea if this is excess enough to mention! Feel kind of embarrased to do it to gynae as he is a bloke (stupid, I know)...

AttilaTheMeerkat Fri 18-Sep-09 15:57:46

Hi emeraldgirl1,

What were your LH and FSH levels and when were these tested in the cycle?. Just as importantly were these two levels compared against each other?. I ask this as these levels can look okay if looked at separately.
And they often are (sigh).

The cystic follicles associated with PCOS can disappear - only to be replaced by further cystic follicles.

At least the GP will refer you to the gynaecologist; this certainly warrants further investigation. Excess prolactin does interfere with ovulation. I would also certainly mention the previous adult acne episodes that were treated with Roaccutane (the underlying cause of the acne was undoubtedly hormonal as well).

I would ask what sort of cyst it is and write down any questions you want answered well ahead of time. If your man can attend the appt all well and good, infact he should go with you if at all possible. He can offer support and ask questions. Meeting such a person initially can cause considerable nerves.

Re a comment that 2ndDestiny made:-
"The only other reason for continuing to consider PCOS would be if you have additional obvious symptoms such as bad acne or excess hair (e.g. on your face, tummy etc.) - if these are not an issue then PCOS is ruled out".

PCOS is a very individualistic disorder and affects each woman with it very differently. I was diagnosed with PCOS on the basis of my bloodwork and a couple of stray hairs on my chest (I had no adult onset acne). I know of women who have neither hirsuitism to any great degree or adult onset acne and have been diagnosed with PCOS. You don't have to have all the symptoms by any means to be diagnosed with PCOS.

I hope you get proper answers soon; you need this first and foremost.

Attila

AttilaTheMeerkat Fri 18-Sep-09 15:59:31

Have you throughly had your thyroid levels checked?. This is another possible cause for high prolactin levels.

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