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Just found out have PCOS - angry rant

5 replies

Orlea · 19/11/2013 14:42

I've just got back from the hospital where I had a scan which revealed I have PCOS. I am due to go for blood tests next week - apparently I should have had these first, but my GP had put me in for a scan thinking it would take ages, so in a way I suppose I'm lucky that I got a quick appointment. The nurse who did the scan said that while she couldn't make a diagnosis, the scan indicated there was zero chance I don't have PCOS. So maybe I am jumping the gun without a firm diagnosis, but she was pretty clear that it was PCOS and as I have some of the symptoms, I'm not surprised.

Actually, I am slightly surprised, and very angry. I went on the pill (Microgynon) at 16 or so for horrendous periods; contraception was a convenient extra. I posted on another thread about being scared that my periods would go back to being horrendous when I came off the pill a few weeks ago - so far, they're not too bad. However I've had a couple of the other visible, embarrassing PCOS symptoms, such as hirsutism, ever since puberty. I have mentioned these to various GPs over the years, usually at the same time as going for my pill prescription, and not once did anyone ever suggest it might be worth testing for PCOS, even when I hesitantly asked if it might be that, or that there was any treatment for the symptoms - I was basically expected to just deal with stuff myself. Which I have done - every single day of my life, because that's the kind of upkeep needed. I have the horrors about ever being in a situation where I can't nip to the bathroom first thing in the morning and tweeze my chin and upper lip. So I sat in the carpark and did a rough calculation of how much of my life I have spent doing nothing but dealing with hair - so far, a mere 2600 hours, give or take. This is what I'm so angry about - there is treatment for hirsutism available. Sure, it might not have worked - but if it had, I might have spent a couple of months less of my life on hair removal. Plus I've had some awful ingrown chin hairs, resulting in hideous spots. I've spent a considerable amount on things like laser treatment, to no avail. I used to get teased at school for my upper lip hair, before I started removing it. So it's not just the time; it's the cost, the hassle, the inconvenience, and the embarrassment.

This is turning into a bit of an epic rant... Of course I am concerned about the other implications of PCOS. The reason I had the scan is that I told my new GP a couple of months ago that I was considering coming off the pill to start ttc, and wondered if it might be worth revisiting the PCOS question. This GP, out of all those I've seen since I was a teenager, actually listened, agreed it was a possibility, set up the scan etc... He did say it was as much to set my mind at rest as to test for PCOS, but that if it did come back positive, then at least we'd know that before even starting to ttc. Which we now do so I suppose we can take action accordingly rather than finding out after a year of trying.

I called my husband and he was calm and ok about things, but I do feel I've deceived him and am letting him down - he has never made a secret of the fact that he wants children, and I've just told him that the chance of that has dropped - maybe only slightly, maybe vanished entirely - thanks to my slightly defective body.

So I suppose I'm asking a few things - has anyone been through a similar experience with disinterested GPs failing to diagnose the bleeding obvious, even when asked outright? Has anyone got stories of ttc with PCOS - good or bad? What, if any treatments have people had for PCOS symptoms, especially hirsutism and infertility? Did they work? Am I doomed to be hairy and childless?? Can I kick someone's ass for having needlessly wasted so much of my life bloody plucking and tweezing???

I have to say, I feel quite a lot better even just having vented on here, so if you're still with me, thanks for reading!!

OP posts:
Mollydoggerson · 19/11/2013 14:50

Diet and lifestyle can impact PCOS. Sugar and insulin spikes should be avoided.

petalsandstars · 19/11/2013 14:58

I have some symptoms of PCOS and am officially diagnosed with it but fortunately not hirsutism. Tried for a year ttc with no success.

My gp at the time was fab when I went after that year of trying. Realised when I came off the pill and had really long cycles something was wrong. Referred me for a HSG to check for blockages and then to fertility dept of local hospital where I was prescribed clomid.

Went to docs in the april and conceived first cycle of clomid in the August with monitoring at the hospital.

Had some left and in date so took the same dose myself without monitoring and second child conceived again first time. Now with toddler and baby so have a different set of challenges.

So there are positive outcomes to be had Grin

yummymummylol · 20/11/2013 11:00

I am a life long PCOS sufferer. I was diagnosed in my early 20's and at the time was fairly shell shocked, but since I wasn't TTC at that time thought it wouldn't be a problem.

I had some fertility treatment (6 months of Clomid) to no avail (tho to be fair there were a whole lot of other issues at play then, do not just a PCOS issue)

I then lost weight (I am significantly over weight) and as surprised as I was I got pregnant (I think the general rule if thumb re weight loss and PCOS is that even a 5% weight loss can be enough to trigger ovulation) this was achieved with no fertility help.

After DS was born my cycle went back to being very irregular and we have TTC number 2 a go but initially unsuccessfully. Fast forward 3 years and I found out I was pregnant. Sadly this ended in mc at 9 weeks (it has been said that the risk of mc is higher in ladies with PCOS but there is also conflicting evidence, I just put it down to one of those things)

6weeks after my mc I was pregnant again. I now have 2 beautiful healthy children who I count my lucky stars I have.

In terms of treatment of PCOS I was taking metformin (diabetic drug) and that did seem to help stabilise my cycles, but some docs don't recognise it as a valid treatment (there is also a lot of discussion around continuing to take metformin whilst pg - but that's a whole other thread!)

If you are over weight the best thing you can do is loose some weight (hate to say it but it really can help) and try eating a low GI diet (as this helps the way the body processes the sugars)

As for the hairiness - I am resigned to a life of plucking and shaving. Tbh I am quite lucky that I don't have that aspect too bad!

Feel free to ask any questions!

babyspice2501 · 20/11/2013 12:07

Hi all. I have PCOS and was diagnosed about 2 years ago due to a scan I had to have as I was getting abnormal bleeding but other than that which is now controlled I have no other symptoms. In that way iam lucky. On the otherhand I do worry about being able able to concieve. I have an 11 year old boy and a 4year old girl and probably has PCOS back then so this is a positive. Does anyone know of percentages or anything on being able to concieve with this???

ZombieMonkeyButler · 20/11/2013 12:17

I have PCOS, and have probably had it all of my adult life. There is (or used to be) a cream that can be prescribed for the hair - you rub it on after removal & it helps lessen regrowth somehow. Apart from it didn't work for me. Some consultants will also suggest taking Metformin to help with PCOS (something to do with insulin levels).

However, I do have 3 DCs. DS1 was conceived after 1 year, DS2 after about 6 months and DD after 6 months and one cycle of Clomid.

Back when I was diagnosed (1996 ish), it used to be the case that Drs wouldn't actually be too bothered about confirming/diagnosing PCOS unless you were TTC. This was because it is not considered a dangerous condition and there isn't really any treatment anyway - other than maintaining a healthy BMI & active lifestyle. This may well still be the viewpoint - and the reason you were not referred earlier.

Do not despair, whilst PCOS can obviously make conception harder it by no means makes it impossible. I have PCOS & 3 DCs and I am not unusual. Victoria Beckham reportedly has PCOS & has 4 DCs. I am sure that the consultant will be able to help you.

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