Just been diagnosed...confused

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Just been diagnosed...confused

Postby BabyBonnie » Fri Jan 30, 2015 12:35 pm

I just got my diagnosis of PCOS, on Wednesday actually.

Probably been a long time coming, since I have never had regular periods and I have been having them for thirteen years now! So I think its been a long standing problem. I just feel a little, lost? Think that's probably the right word.

Basically I have been on and off bc since my teens, in order to deal with the irregularity and also how heavy and painful my periods were. There have been periods (no pun!) of time where I have been off bc and everything has been really irregular. I also haven't been careful with my bc down the years (same bloke and we had had sexual health check ups, I am irresponsible, but not that irresponsible) and just thought we had been 'lucky'. Anyway, came off the pill for good back end of 2013, decided that it had really negative side effects for me - weight gain, acne, massive mood swings etc. Missed a number of periods after that, and they were all over the place. Got to April 2014 and thought "I should really start to keep proper track". Turns out they were fluctuating from around 36 days to around 54 days. So I went to the GP.

They initially said PCOS and I was referred for a transvaginal scan and bloods. Bloods confirmed raised Testosterone, Prolactin, and androgens. As well as a FSH level of 1.2 (something around that) and they wouldn't tell me my LH level because the GP "Didn't know what that was." Coupled with my weight problems, and my acne she said it was more than likely I had PCOS.

So I went for the scan. Unfortunately I also have issues down there, which my Dr. believes is either Vaginismus or a retroverted uterus. So the scan was not successful. So there's not confirmation that there are actually cysts at all, but GP believes that it is PCOS because of the blood work and other symptoms.

But that's it. They've confirmed that I will need medical intervention if we want to try and conceive. Also she said I am at an increased risk of diabetes, but as of now my blood sugar levels are normal, so they will continue monitoring me as they were doing before. I have regular checks of my blood sugar and for thyroid problems anyway, as my mum has both and I am considered to be higher risk.

I just feel a bit, lost, like I said. I have been diagnosed with this. I don't really understand a lot about it and that feels like it. I haven't been offered any sort of treatment - and having had a read around apparently bc can be offered to help with the irregular period and the acne. At the moment I feel that I've been told to basically ignore it until such time as we might want a baby.

As things stand I am a little bit confused regarding the fertility aspect. Myself and my OH have always said we wanted to adopt - in fact I really didn't want to have biological children at all, whereas he wanted to have a biological child and then adopt subsequently. However since I first found out that it might not be possible, without medical intervention, I have felt really sad. I don't know if this is normal, I imagine it might be, but I wouldn't have expected it for myself - as I said I was pretty sure I didn't want to go that route. It makes sense though, as I said down the years we haven't been very careful. There was a time that we didn't use bc for virtually a whole year, and at that time I could manage regular sex. We used to sit there and be all like "How to people manage to get pregnant accidentally?!". So I think that has answered that question!

I don't know, I guess what I am asking is where do I go from here? And did it take you time to come to terms with the diagnosis? I am worried I think, just a little bit, that they might have got it wrong. First GP said absolutely, second said it seemed likely and referred me for a scan, third initially said (in a phone consultation), probably not, but then she saw me and said more than likely yes, and that I could have the scan to confirm but she didn't feel it necessary to do so, because it doesn't need a diagnosis really!

Apologies for the long post, and thanks for reading.
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Joined: Fri Jan 30, 2015 12:10 pm

Re: Just been diagnosed...confused

Postby NoodleBrew » Wed Feb 04, 2015 10:21 pm

Hello :)

I'm new here too, but didn't want to read your post and run.

Re: medical intervention for conception, did they say this was because of the pcos or your other problems? Lots of people with pcos do eventually get pregnant naturally or with the help of drugs like clomid so the pcos itself doesn't necessarily mean you'll need intervention, but I can't speak for the other issues.

I got diagnosed about 11 years ago at 17, was also not given any help, and remember the confusion and various stages of exceptance. A family member bought me Colette Harris's books on pcos, I imagine the've gone through several revisions as the editions I've got are a bit out of date now, and I notice there are way more pcos self help books out there than there were 10 years ago, but I would still recommend them as a starting point. I also recommend a couple of low GI recipe books, again there are now heaps but I really like the Anthony Worral Thompson one.

I found dianette the best pill for controlling symptoms but have been off it for a couple of years now. There are lots of supplements which it's thought might help with pcos including inositol, chromium, vitamin d and agnus castus if your prolactin is high. I also eat a lot of cinnamon as it's thought it might help with insulin sensitivity, and drink spearmint tea as there is some evidence that it lowers testosterone.

I'm sure you'll find loads of helpful advice here on all aspects of managing and living with pcos :)
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Re: Just been diagnosed...confused

Postby purplep » Thu Feb 12, 2015 10:36 am

I definitely think it takes time to get used to & have you head sorted around diagnosis. Rushing won't help you but at the same time, don't give up on getting what you need from GPs. Are the ones you've seen all at the same practice? Keep going & if you want help to manage symptoms, look at your options & go to GP armed with info...?
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Re: Just been diagnosed...confused

Postby Hols969 » Sat Feb 14, 2015 7:30 am

Unfortunately that is the standard response, a diagnosis and then you are on your way!! Diet is key to controlling the symptoms so go for low gi.
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