PCOS - no periods at all?

[NicotineRushh]

Hey ladies,

I had my PCOS diagnosis a few years ago now, but the GP wasn't very knowledgeable.

I had regular periods from about 13 to 17, then from 18 to 19 it was very irregular.

From 20 until now (27) I haven't had a single natural period. Last year I spoke to my GP as after doing research I found that not having any kind of period increased the risk of certain types of cancer. I now have some tablets prescribed to force a period, and I need to do this 3 times a year minimum. For nearly 6 years I had no period whatsoever!

I've been on metformin for a year now, seeing no difference in weight change nor increase in periods. We have our first appointment with the fertility clinic via phone on the 30th of this month and I'm dreading bad news!!

Just another thought too, would having no periods effect the chance of being prescribed clomid?

Have you been tested for premature menopause?

This seems to me like a severe case of PCOS. I hope that you won't hear any bad news.
I'm wishing you the best of luck, and let us know as soon as you have any news!

Hi,
I have lean PCOS and was diagnosed early 20s. I do not have natural periods either.
I haven’t noticed a change since on 500mg of Metformin either, although I know this is a low dose so this may be the reason why. The side effects are too bad to try and increase (I’ve tried several times). I’ve also heard good things about myo-inositol and so have recently started taking 4g a day.
I’ve had a HSG and all the blood tests etc before starting Letrozole. My partner has had several tests as well. My first cycle on Letrozole was 5mg and this didn’t make me ovulate so my next cycle which I’m due to start after a period has been induced will be increased to 7.5mg.
I’ve never spoken to anyone who doesn’t have a period (lots of people with PCOS seem to have at least 2 or 3 a year) but never none like myself.

I very rarely get periods and I have PCOS and I only tend to get given provera if I'm under the fertility clinic and doing a medicated cycle.

Have you asked them to check your prolactin? I had the same issue and was diagnosed with a prolactinoma which is a small tumour on the pituitary gland. It had been pumping out massive amounts of prolactin which had caused infertility. Not quite a year on treatment and my cycles have returned.

Hey ladies! As awful as it is for those effected, it is somewhat of a relief to know it's not a unique case. Whenever you Google PCOS and absent periods it only talks about irregular periods, never those who have none at all!

With regards to early menopause, I've not asked specifically for this to be looked into, I might raise it with the clinician on the 30th? The other symptoms of menopause don't ring true at all though, but would be nice to rule it out.

I've waited nearly 3 years for this appointment, but now it's upcoming I feel really impatient about it. It would just be nice to kinda know where we stand!

@Daisy0022 if you ever want to chat about anything, feel free to message me. Sounds like our situations are very similar, and it would be nice to have someone who understands!

@Ljh2019 I'll definitely ask them to check this out, thanks for the advice! How do they test for this?

A very simple blood test, I actually thought I had a thyroid problem which prompted the bloods and it was apparent from the first results.

@NicotineRushh I would agree it's worth getting some more bloods if you haven't done already just to rule out other causes of lack of periods and yes you should have a certain number of periods a year to protect against certain cancers!
There is a form of Metformin which is slow release and it tends to have a better side effect profile could this be worth looking into?
Good luck for your appointment!xx

Update - Hey ladies, just wanted to post a quick update if anyone else is in the same situation!

We had our appointment on the 30th via phone, the consultant was lovely! She asked me and my husband a lot of questions, the majority of which were covered in initial GP appointments but she went into a little more detail. She went through test results and explained them fully to us which was great!

She doesn't think I have suffered early menopause based on the test results, and has arranged another meeting for 4 months time. I'm to follow a strict low GI diet, and bring my BMI under 30 by the time the next appointment comes around.

Husband has to have another sperm analysis as our local hospital didn't test the duration they kept moving for, so he is to do that at the hospital she works at. I need another internal scan just to make sure my cyst count is the same as before.

She has also prescribed folic acid, vitamin D supplements, and a pre-natal vitamin. She didn't seem worried about the fact I didn't have periods, as long as I take the norethsterone (something like this) tablets to induce a period 3 times a year.

Perhaps the most interesting point of all, was that she told me to stop taking metformin. She said the science has shown (for around 10 years!) that metformin does not actually help those with PCOS control their insulin. Which is a relief as I have such bad side effects from it!

@NicotineRushh In general, the news weren't bad. Best wishes to you and your husband!
p.s what she said about metformin is interesting indeed. I had no idea.

@NicotineRushh The consultant is technically correct, in that metformin is only a bandaid solution to controlling your insulin and should be the last resort after changing your diet permanently.

I'm a bit surprised you were given Metformin originally given Clomid was comprehensively shown to be better for women with BMI > 30, although keeping up to date is not easy for GP's.

www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003053.pub6/full

However Letrozole is now unofficially the first choice for ovulation induction in women with PCOS.

There's a big article on fertilpedia that lists the pro's and con's of the various supplements, medications and treatments if you have the time.

fertilityscience.org/getting-pregnant-with-pcos/