Newly diagnosed: I've always 'suffered... - PCOS UK (Verity)

PCOS UK (Verity)

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Newly diagnosed

Springerlover1 profile image
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I've always 'suffered' with periods that are heavier or more painful than my peers since the age of 11. Now at 33, they have been noticeable worse for around the last 3/4 years. I've experienced:

-Terrible period pains, scaling from typical 'bad' pains to extreme where I'm in excruciating pain (doubled up, numb legs, sweats, back pain etc.) to the point where my husband was so frightened by it in the past that he had his phone ready for an ambulance.

-Heavy periods, I can't wear tampons as I find the pains are worse. I now where the large night time pads, change every 2/3 hours on the worse days. My periods have started to be around 9/10 days now. Recently one was 2 weeks.

-Fatigue, can barely keep my eyes open even after a good night of sleep

-Sometimes I find I get flushes during that time

-I am a teeny tiny bit over weight (4/5 pounds, that's all) but noticed lately its just been harder to shift that little bit. but generally always been in the healthy weight range (we eat fairly well, I cook 90% of our meals, eat a good amount of veg and fibre, only have meat about 3 times a week. We have a dog and walk every day)

-Definitely noticed more facial hair over the last few years, I'm very lucky that I naturally have fair hair and skin so just manage the darker ones that pop up.

-I haven't been missing periods but have noticed that they now vary by about 4/5 days

-and perhaps the newest one for the last 3/4 years, that I am finding the worst of all, is the affects on my mood. There was a particular one about 4 months ago where, I can only describe, as a depressive episode. It was for a full day, I was on my own as my husband was on shift, and I was so low I could barely speak or do anything. Next day, back to myself! So I can only assume this is due to hormones. And that was the most frightening part of all of this. I feel like I am starting to lose control of my mental state during those days before and at the start of my period.

All of this has started to affect work, and I LOVE my job. I work from home, which helps as I can have days where I don't have to dress up etc. and I have an extremely understanding manager who is very supportive. I honestly couldn't ask for more from them.

I have had a poor experience through the GP and Gyn, where they have barely listened or just made assumptions. Smears have been clear and I finally managed to gain a pelvic ultrasound. I then received a call earlier this week where they said I had Polycystic Ovaries. All she said was, that as I had been missing periods that to contact GP and discuss the pill or coil. I had to explain AGAIN that I hadn't been missing periods to which her response was......to just manage it. That was it!!! No suggested support, not even a mention of the affects on fertility (myself and husband decided we did not want children some time ago luckily but I cannot imagine the impact on someone who wants to have children).

So here I am, I found Verity and have requested to join their local group for support and posting on here. I will also be contacting my GP to push this further. But I would love to hear from those with similar experiences, particular if anyone has any advice on alleviating the symptoms of the moods or pain in the meantime (obviously no one can give advice on medications etc.) but did lifestyle changes help? How have you found the symptoms as the years have gone on? Are there any other groups out there that can help?

Thanks everyone in advance, there's probably a tonne of questions I've missed off but my head is still spinning tbh.

Love and support to all of you who are powering through this!❤️❤️❤️

Amy

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Springerlover1
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halfamo profile image
halfamo

Hi

PCOS is most likely a genetic sensitivity to carbohydrates. Most women with the condition are suffering from insulin resistance. This affects the ovaries and causes increased testosterone. It affects cycle and mood, causes acne and hirsutism.

There does appear to be quite a bit of anecdotal evidence about following a keto/carnivore diet, as this helps to keep blood sugar spikes at bay. Unfortunately there are a lack of studies because most studies are funded by pharmaceutical and food companies, and there is no benefit for them to find a 'cure'.

You could have a look at spearmint tea, as there is growing evidence this helps balance testosterone, so can help with hirsutism, acne etc.

I have seen that terminal hairs cannot be reversed, but the tea can help with progression. Do some homework in case of pregnancy as I don't think it is advised in those circumstances.

Exercise should be more anaerobic to keep cortisol levels low, as raised cortisol is inflammatory. Have a look on Youtube for slow weighted exercise, and keto/carnivore diet for PCOS.

If you are having heavy or extended periods make sure you are not anaemic.

I am post menopause, and I still have to manage symptoms.

I wish you all the best.

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