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Mass in uterus and PCOS - can anyone point me in the direction of information?

(8 Posts)
daisydotandgertie Sat 03-Oct-09 17:58:40

I recently had a 80 odd day cycle and went to the doctor to try and find out what was going on.

They took bloods and stuff, then referred me to a consultant and for an ultrasound.

I had the ultrasound last weekend and the sonographer said she found a 8cm x 7cm mass (she said fibroid) in the middle of my uterus. She couldn't see past it to check anything further north.

On Thursday this week, I went to the first consultant appointment. She was expecting to talk to me about my single long cycle, but I told her about the ultrasound and she went off to get my notes hmm.

She came back with the notes from the ultrasound and the most recent set of blood tests.

She told me that although the LH and FSH levels are within the normal range (LH 6.1, FSH 4.6), they clearly show I have PCOS (Thanks to Attilla for suggesting that when I posted them in August). She asked me about other symptoms - I have none apart from being wildly overweight and one very long cycle.

I have read that for an accurate diagnosis, bloods should be taken on CD3 - mine were taken on CD82. Should I worry about that?

She has also told me I need to go on a carbohydrate free diet because my hormone inbalance means I can't eat carbs without producing far too much insulin. The insulin is a growth hormone and will carry on making me fatter.

Is anyone else doing the same diet for the same reasons? Can anyone recommend a book to start planning?

We then moved onto the mass, which is apparently filling my uterus. I told her I had a Mirena removed in July last year, and was surprised they'd found any space to actually insert it in the first place. She went a bit quiet then. She said it looks as though it has grown that big in just over a year.

It does explain why I've had 3 chemical pregnancies this year though.

I am going for a camera investigation and biopsy on Thursday. She wants me in as soon as possible.

What should I expect?

I am a bit worried about it all to be honest. I'm 40 and TTC no 1.

I hadn't guessed anything was wrong. I don't really have 'symptoms' as such.

AttilaTheMeerkat Sat 03-Oct-09 19:08:18

Hi daisydot

You're very welcome but sorry to see you now have a PCOS diagnosis.

Bloods should be taken on day 3; as your cycle is very irregular the blood tests can be done according to calendar days. Blood tests can be repeated to see if there are any changes in levels of LH and FSH (mine did not alter much over several months). Its little point taking them so late on day 82.

Many PCOSers find a low GI (glycaemic Index) or GL (glycaemic load) eating plan more helpful than a low or no carb diet as it is not sustainable in the long term. Collette Harris (to name but one; she has PCOS) has written several cookbooks and you may want to look at her recipes. Some PCOSers are indeed IR (insulin resistant).

Verity's website is for PCOS and may be helpful to you - www.verity-pcos.org.uk

Would like to wish you all the very best with regards to Thursday's appointment. Let us know how you get on.

daisydotandgertie Sat 03-Oct-09 23:56:49

Hey Attila - you found my thread quickly. Thanks to you, at least I had heard of PCOS before the consultant started talking about it.

I am surprised by her diagnosis though, just because I don't have many of the symptoms, and because I seem to be ovulating regularly. My cycle is mostly clockwork (27 days) with only 2 longer ones (a 44 & the 80-odd).

I think she's spot on with the IR though; does it affect you?

I am most worried about the mass at the moment though. It has to be why the positive pg tests I've had have all failed. I hope it's a fibroid - which the consultant wouldn't say - and that it can be removed. Otherwise I think it's game over.

Ilovechristmas Sun 04-Oct-09 19:24:16

Hi Daisydo; I am having a similar problem and have to book another app with the gyni. My last period was mid-july!! I am in my mid forties but was advised in June I was years off menopause or peri menopause. I do have a slightly bloated lower abdomen, but the dr felt my stomach and didnt say he found anything strange. I also had a scan in feb with showed everything working well. I hope all goes well for you on Thursday, please let us know how it goes.

Ilovechristmas Sun 04-Oct-09 19:26:40

sorry; missed the 't' off !!!blush

daisydotandgertie Mon 05-Oct-09 20:17:58

Hi Ilove - sorry to hear you're having period oddness too. I think there's a lot of it about. Did the doctor say anything about blood tests? And LH and FSH levels? Attila was def on the money for me when I had my results back.

It's been a bit overwhelming to be honest - from one odd cycle in pretty much my entire life I have found out I have a fibroid, a problem with insulin and PCOS.

I've been to the library and taken out the few books they had on low carb diets and have done not much else today but try and work out a low carb diet!

Have you booked your appointment yet?

AttilaTheMeerkat Tue 06-Oct-09 07:36:05

You're better off having a look at low GI/GL eating plans than low carb as low carb is not without problems. Also low GI/GL is more sustainable in the long term.

Collette Harris (amongst others) has written some bookbooks with PCOSers in mind (she has PCOS herself).

daisydotandgertie Tue 06-Oct-09 11:41:56

Atilla - I think you're right. I've done some reading on a low carb diet and it just doesn't look sustainable.

The consultant was very off-hand with her advice. She just said cut out carbs. I can't believe that she meant it literally. It'd be a very unbalanced diet if she did, and I know I'd find it very, very hard to do.

I've already ordered a book from Collett Harris which you've recommended - a low GI diet looks a far better bet. Much more normal, and much more sustainable. And for me, a lot more bearable!

I also found a Good Housekeeping low GI diet book which had lovely and clear guidance, along with a few good recipies.

Have you taken the diet route? And has it shown any results? I'd be really interested tto know.

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