PCOS UK (Verity)
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Possible PCOS

Hi all,

I'm new to the community but have been reading through some posts, it's relieving to hear other people's experiences.

I will try and keep my story as brief as possible. I'm 30 years old, always suffered with my periods being very heavy and irregular so had birth control for many years. Recently I have had the mirena, the first one worked great, so I had it replaced about 18 months ago. Unfortunately since then I haven't had a proper period, a few days spotting rarely, constant period like belly ache almost daily, pain before and after bowel movement, pain during sex, weight gain of almost 2 stone, up and down moods and bloating. (The coil is sitting correctly)

I went to see a doctor, it's not the first time but others I have seen just fob you off, this one was nice and she listened and understood. She referred me for a transvaginal pelvic US, and the report read 'left ovary just within normal limits at 9.5cm, right ovary has multiple follicles and swollen to 13.9cm indicating PCOS'. Next were the blood tests but everything says normal on the results, FSH 4.8, LH 6.2, testosterone 0.50nmol/l and Free androgen index is 0.80 % which is at the lower end of the range for my age bracket. I know I am no expert but could it be that those readings are abnormal themselves given the other symptoms, no periods and multiple follicles. From what I've read about hormone levels there are many variants with PCOS which makes the condition difficult to understand/diagnose.

Me and my partner aren't trying for a baby, I just needed to get an answer to all the problems I am having, getting close to answers made me feel like I wasn't going crazy! But now I think it's going to be a bit more of a journey. I have asked the doc to refer me to a gynaecologist, so let's see how long that takes.

Thanks for reading, sorry for the essay.

x

5 Replies
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If you have cysts then you have pcos, bloods can come back normal sometimes for some reason. There is a link between pcos and endometriosis as well so ask to be referred to an endo as endo and pcos is their specialty. Pain generally is associated with endo rather than pcos. Does your coil include the hormones as I know you can get one without hormones. I am on the combined pill which for me has kept my symptoms pretty much at bay (it is not to say I dont have them they are just reduced considerably, I also take 2-3 months on the trot as it reduces the symptoms further). It almost sounds like you had hormones the first time with the coil but not the second as everything (except the pain) is typical pcos, stick to a low GI diet and cut out all white carbs as they are the route of all evil in my opinion when it comes to pcos!

Ive just started the keto diet, start of week 4 and Ive lost 6lb and 3 inches off my waist (my waist is where all my weight is generally!) Cant say I overly like the diet as high fat, low carb, but it is working so I can stick to it and getting more used to the fat now.

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Thanks for your reply, i do indeed have the mirena coil with hormones, it seemed to work better for me than the pill. I did wonder about endo, when i get an appointment with a gynae i shall definately bring it up as its something ive thought about for a while. I also found out from my maternal grandmother that she went into menopause early 30s, suffered with her periods but never saw a doctor, 4 years ago she got diagnosed with endometrial cancer so i wonder if she suffered with something undiagnosed for all that time (shes 74 now).

Seen as its going to be a while i thought i would keep a diary of symptoms and try to exercise more and lose some weight, although i have an active job already ( i dont know how much more i need to do lol) so when i get an appointment i have as much information ready as i can. I will look into to the diet possibilities too, thanks for the suggestions. i find theres so many out there it gets a bit overwhelming.

My mood really suffers sometimes, more so quite a lot lately. The tummy ache most days varies in intensity but is always there, and i feel people around me dont necessarily understand, i carry on about my daily life as most people do. I dont like to moan or seek sympathy, but because there are no outwards signs that anything is wrong, it just gets chalked up to me being moody. Sometimes i cant even explain why i feel like i do, and that i get frustrated with.

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I know you can get ovarian cancer due to lack of periods as well which pcos is a risk of. What about your mum's menopause - it does follow down the line though, but if your mum is more normal then its obviously both lines you need to consider rather than just your grandma.

I find that exercising confuses my body when dieting, we do tend to put on 2lb a month by eating the RDA so over a stone a year which is a little irritating so we do need to eat considerably less just to maintain our weight, so cut out the white carbs totally (I havent had carbs at night for about 4 + years now (obviously on keto so have no carbs at the mo) and actually once you get your head around it it is ok (bol with no spag or curry with no rice was really weird in the beginning!!!).

So your moods are not just when you have a period then?? It almost sounds as if you are on a non hormonal coil as your symptoms have come back along with the weight (I put on 3 stone when I came off the pill when trying to conceive), I was not perfect eating wise as it took 3 years to conceive Noah who is now 12 so was a little depressing at times so I probably did over eat sometimes!!

Good idea to keep a food diary and exercise diary, it may trigger what suits your body. I also eat live yoghurt every daY (I make my own called easiyo and I havent been unwell really for 4 years as my gut bacteria is good, I only eat full fat stuff too as too many hidden sugars in the low fat options and sugar doesnt help our pcos symptoms) so dont opt for low fat.

Just as an extra note, there is a link between pcos and depression/anxiety too, so if you find your mood low consistently then consider anti depressents, I am on them (only 3 tablets a week) and for me they help massively. I had got PND after Noah was born and went on them and came off them for about 5 years and went back on them a few years ago as I was fed up with feeling really low all time, so they are non addictive (the only issue is the nerves from coming off them as you worry you may not cope, but if you wean yourself off them then you realise you are ok) so dont feel ashamed if you need a bit of help, we have a hormone imbalance which plays havoc with us sometimes!!

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I think my mum started going through it late 40's, we aren't in regular contact (That's another story) but I know it wasn't as early as my nan.

My moods seem to be random, definately worse at certain times of the month but as I haven't had a proper period in almost 18 months I couldn't say if it was my cycle. I infrequently get a minor bit of spotting but sometimes for no more than a day, and nowhere close to what I would say was a period, and it doesn't occur often at all, months can go past with nothing at all, just a worsening of mood, bloating etc but no period.

Looks like it's carb cutting for me than, and more vegetables etc, will start trying to follow that more in preparation for gynae appt. I walk a lot at work but might look at incorporating some weight training to try and shift the fat.

Somedays I don't feel like I can cope, but others I just get by and crack on. I am better if I'm busy, I'm not very good at doing nothing which is ok as long as I can find things to do!

Thank you

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I would go back to your GP and mention that your pcos symptoms are increasing since the new coil, it could be possible that it is a faulty one, I personally would come off it and go on a combined pill for 6 months and see if it improves things and then perhaps get the coil again.

I know what you mean about busy, I am not at work and it makes time drag and doesn't help from a mood point of view, but your brain and body does need down time so don't avoid it too much and if you do find you feel too low too consistently then consider anti depressants, they made a massive difference to me, I am quite open about it with others as I get cross about the stigmatism of them as its no different to a physical issue really it just cant be seen.

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