Hello, I'm new here so thought I'd introd... - PCOS UK (Verity)

PCOS UK (Verity)

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Hello, I'm new here so thought I'd introduce myself!

Daydreamer99 profile image
6 Replies

Hi, just though I'd introduce myself!

I'm 17 and was diagnosed with PCOS, a genetic form of insulin resistance and some other symptoms that come with it (unwanted hair, a skin condition called acanthosis nigricans and swollen sweat glands/cyst type things in the same areas as the skin condition). I have never had a period (and have been told by friends that I'm lucky!), although of course wish that I do have them, as they show that your body is working normally.

As for medication, I used to take metformin 2x500mg twice a day. I say that but I only really took it for a year when I was 12. I built up a bit of a phobia about taking it, despite having no side effects, and lied to doctors and family about taking it up until recently. When my mum first found out I wasn't taking it, she made sure I did and watched me, although it was awful... I'd sometimes spend up to 2 hours taking them. I'd physically gag (and once threw up) and do anything in my power to avoid taking it. I'd then proceed to get flashbacks throughout the day, visualising having to take them, which again made me gag and feel physically sick (not ideal when you're in college trying to concentrate). I tried swapping to the liquid form, but this made absolutely no difference. I started seeing a councillor, as it was a mental issue, I'm absolutely fine with taking any other medication. And then at christmas when I saw the specialist she said that if it was this bad, and there was no real proof that it was helping my condition and not-taking it or the past 5 years hasn't had any affect either, then I could stop taking it. That made me soooooo happy and was the best christmas present I could ever wish for. I no longer had to struggle being made to take it or with the guilt of not taking it!

For dealing with my hormone levels (extra male hormone, as I'm sure lots of you have!), I was originally (when I was 14) prescribed Dianette by my GP, which didn't have an effect on the hair side of things, but I felt like my skin looked better and my sex-drive decreased (which seemed to be quite big, more akin to a 16 year old boy than the rest of my girl friends). However, with input from my mum and her intense googling of the side affects after reading an article (young girls dying from thrombosis as a result of the drug) , I stopped taking this after about a year. Last year I was prescribed flutamide by my specialist (usually given to men with prostate cancer). It's not had any dramatic affects yet, although I will admit that with all the metformin issues that I had, I haven't taken it religiously. My dose is being increased (what seems to be roughly every six months, I've only had once increase so far) until I start my periods I think.

So I guess we just wait and see what happens in the future. I would like to have children and have been assured by doctors that it's very likely that I will be able to, with the different treatments available. We're very lucky to like in an age where so much is available to us!

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6 Replies
Franjanu profile image
Franjanu

Get off the pill and metformin if it doesn't work for you. I have PCOS and it causes so many bad side effects I stopped.

I take primrose oil and vitex and sometimes saw palmetto. I got my period back after many years of nothing and comes every month!! Not heavy not so painful anymore. Eat clean more plant based and remove the rubbish from your diet like animal hormones. They won't help good luck! Eating clean will help with hair growth and weight too

I get my supplements from iHerb you can get a discount if you like

QWV374

Www.Coconutandwhat.Com

Daydreamer99 profile image
Daydreamer99 in reply to Franjanu

Thank you, I've stopped taking metformin so am just on the flutamide at the moment. As they increase the dose of the flutamide, I should at some point get my periods. What does the primrose oil help with?

Franjanu profile image
Franjanu in reply to Daydreamer99

Primrose oil helps to balance your hormones and especially important with those with pcos there are no side effects and it can also help with cramps etc ☺

Daydreamer99 profile image
Daydreamer99 in reply to Franjanu

Thank you!!

Hols969 profile image
Hols969

Make sure you have 4 periods a year to keep your uterus healthy. I am a fan of the combined pill as it keeps my symptoms under control, find it easier to lose weight and less hormonal, I have been on and off it for 30 years, their are lots to try so if one doesnt suit try another.

Daydreamer99 profile image
Daydreamer99 in reply to Hols969

Hi, the flutamide that I'm taking (usually given to men with prostate cancer) should induce my periods once my dose is increased to a high enough level. But for now, the doctors and specialists say that everything is healthy and fine!

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