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PCOS All advice/stories welcome

(11 Posts)
AFreudianSlip Thu 16-May-13 14:37:13

Hi,

After trudging through as many threads as I could manage I've decided to post and see if any of you wise ladies can offer some words of wisdom, or see if there's anyone in the same boat.

This morning I got diagnosed with PSOS. Im feeling pretty emotional but i knew deep down i had it. I went for a transvaginal ultrasound last week (after having severe pelvic pain mid cycle) and the woman said she could see some small cysts on both ovaries which apparently upto 20% women have. She suggested multicystic ovaries, said there was nothing sinister and sent me merrily on my way.

However my dr (new, abrupt and slightly terrifying) said she believes I have PCOS. She said that its common, my ovaries look normal size, and that I am probably ovulating albeit sporadically. She said that I should come back after 2 years of ttc if we don't. We weren't ttc but we are now :-).

Im 24, not overweight, not particularly hairy, and with only a small acne area on my chin which flares up and then dissapears. I'd been on mycrogynon for 8 or so years, obviously masking the problem, and since coming off I've had 100 day cycle, 51 day cycle and a 50 day cycle. I'm now on cd16. She seems happy they were 'regulating'.

What the hell do I do now?? I guess I should try to shorten my cycle, and have read about agnus castus, is this worth a try? And apparently low gi diet is good (this definitely explains my sugar cravings). I've also found a guy locally who specialises in gynaecological acupuncture and herbs. I take epo and sepia. I know I'm jumping the gun a bit, and things may all just 'happen', but I'd love to hear from others with pcos and their stories.

Laptopgirl Wed 22-May-13 08:43:42

I have PCOS and conceived ds taking Agnus castus. I would say go for it! Xxx be sure to only take it up til ovulation xxx

FrankellyMyDearIDontGiveADamn Wed 22-May-13 10:03:43

I would say do not touch Agnus Castus unless you have consulted with a herbal practitioner. There are plenty if stories of women who have self-medicated with AC and found their cycles even more messed up.

PCOS is horrid, I was diagnosed 2 years ago aged 30. My cycles since coming off the Pill in 2010 have varied between 29 and 100+ days.

My advice would be to see how it goes for a year before you start throwing money at acupuncture and herbal products. Most women with PCOS will conceive either with help or without. It may sound a bit patronising, but time really is on your side at 24. If you are desperate to conceive ASAP it sounds like you may have to consider going private as your Dr has told you to try for 2 years before coming back

The low GI diet is one proactive step you can take. PCOS has been linked to insulin production, so such a diet won't do you any harm.

Good luck.

LittleMissMedium Wed 22-May-13 15:41:01

Hi, AFreudianSlip

First thing I would say is research, research, research. PCOS sucks and there is no cure but it is completely manageable with a good diet.

I was diagnosed almost 2 years ago (at 21) and I felt like such shit about it - basically at 21 having to consider your fertility is bleak and everything seems really dramatic. I was overweight (11st when I'm only 5'2), and my periods were averaging about 50-60 days long. I'm not hairy but I did suffer from acne and like you, Microgynon had glossed over my issues during my late teens.

I spoke to my GP about going on Agnus Castus, and she said to go for it. I also cut out bread and sweet things (basically carbs) because these seemed to have a real impact on me. I lost a stone and gradually got down to a 35-40 day cycle - this isn't textbook, but it's a work in progress so I'm happy with it.

Basically, my scary but straightforward GP told me this:

> "You and I can eat the same thing, and you will probably put on more weight than me. Nothing you can do about it. Watching your diet is key"

> "You will have it for the rest of your life, so learn to manage it"

> Plenty of women with PCOS conceive with no problems (though if this is something you want, I wouldn't be waiting two years like she suggested... My GP said 6 months, but she's particularly understanding and specialist in female fertility)

We've put off TTC for a few more months whilst we move house, but I know from reading every single thread on this site (in sheer desperation!) that one way or another, I WILL conceive. Don't get yourself down about it.

And read Taking Charge of Your Fertility - it's a bloody revelation.

Good luck!

AttilaTheMeerkat Wed 22-May-13 16:34:44

I was diagnosed with PCOS some years ago and am now a parent (following ovarian diathermy surgery). You are right in that the BCP does mask the underlying problem.

PCOS is an individualistic disorder that affects each woman with it very differently. No two PCOSers are alike; the only commonality is the cystic follicles on the ovaries. These disappear only to be replaced by further cystic follicles. A polycystic ovary as well can appear larger than normal (walnut) size. The surface of the ovary can also appear thicker.

Although some women with PCOS do conceive without medical help, many do not and they will require some help in order to conceive. It can be a long and hard journey to conception.

Would not say that your cycles are at all regulating themselves; these are still likely to be anovulatory given their overall length. A "normal" cycle is a cycle length of between 21 and 35 days or with less than 4 days of variation from month to month.

Would totally avoid self medicating with AC as this can make the underlying hormonal problem worse. If you really did want to try this you would be far better off seeing a properly qualified medical herbalist re dosage. No also to doing temp charting and OPK's; both are pretty much useless when it comes to PCOS.

www.verity-pcos.org.uk is a helpful website.

You should be referred to a subfertility unit after 12 months of ttc without success, not two years. Gynaes generally also like to see people after a year.

BTW is your severe pelvic pain mid cycle cyclical in nature?. That should be further investigated as its not likely to be related to PCOS at all.

CharmingCats Wed 22-May-13 17:08:51

Hello,
I'm convinced that I have pcos, although my gynae has not actually diagnosed it. A transvaginal scan showed follicles on both ovaries and my cycles vary from 42 days to 107. I too have one or two patches of acne, but no weight issue and not too much hair.
I second the advice to do some reading and to go back to the GP after 12 months rather than 2 years of ttc. I've tried acupunture, but it hasn't regulated my cycles. Am making changes to my diet that should help and am starting to exercise more regularly.
We've been ttc for 10 months and am arming myself with information for when I go back to GP for help. The dietary changes can really help and make you feel more in control. It is a condition to be managed for life, but an extra pain when ttc.
Good luck!

addictedtolatte Wed 22-May-13 17:14:17

I have pcos and have 2 children conceived naturally. I know it sounds cheesy but I just stopped trying too hard and it. Good luck op

Iwaswatchingthat Wed 22-May-13 17:22:28

PCOS with 2 beautiful dds.

One with the assistance of metformin, then chlomid.

Next one with the assistance of one too many vodkas!

Cycle before dd1 did not exist. No period for three years. Since dd1 cycle is long, but fairly regular. Usually 36 days. The fact you have a cycle is brilliant OP. I would not wait two years though - go back after six months. However I don't think you will need to. Good luck xxxx

tanyatanya Wed 22-May-13 22:47:15

I had my son at the age of 37 after taking metformin and Clomid and following a low carb diet and regular exercise (after TTC for 5 years). Pcos is hard but you can learn about it and can be treated. Some GPs wont prescribe metformin, so insist on being refered to a consultant. Never give up hope.

Iona1651 Thu 23-May-13 12:30:14

Hi everyone
I'm starting to wonder if I have PCOS too? I had a cyst on my left ovary in March last year together with a MC. Been TTC since then. Had continuous pain and now back under gyna. Had a scan and an internal scan which shows a cyst on my right ovary. I'm getting terrible pain in my left side but the lady said nothing was showing. My last AF was 4 April and on 26 April when next AF was due I had severe pains in both sides (ovary area) but no AF. I am not pregnant and am now 25 days overdue and have had pms kind of pain since 17 May when my next AF was due. Do you think I'll get my AF? I feel so bloated. Any advice or comments would be appreciated.

babyseal Thu 23-May-13 13:16:23

No specific advice regarding Agnus Castus etc but I wanted to tell you my success stories. I was diagnosed with PCOS some years ago and told I may not conceive naturally. I was devastated as I was in my thirties and single and had always wanted kids. I met my ex-dp 3 months later and got pregnant by accident about 6 weeks after that blush. We then decided to start trying to conceive dc2 when dc1 was about 18 months old and it took about a year to conceive naturally, but not too bad really seeing as my cycle was about 60-70 days long at that point.

Since I stopped breastfeeding her I have been following a gluten-free diet (my Mum is coeliac and gluten started to affect me negatively), but it also seems to have sorted out my PCOS and I have normal 30ish-day cycles now and have lost a stack of weight. Still got a bloody hairy chin though angry.

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