New to PCOS/so confused?

[Winterwonderland1]

Hi everyone, having some issues with PCOS or suspected PCOS here.

Had been on a low dose combined pill (Gederal 20/150) for 3 years and before going on it, had very regular periods. My app was always accurate to the very day and never any issues.

Post-pill got my period back after 35 days. It was a bit lighter but thought nothing of it. Until August, had a period every 30-35 days and all was fine. Then nothing from August until now, no period.

Saw a gynecologist and had a scan, she found polycystic ovaries on both ovaries. She told me not to panic and to wait until period came to do the blood test for hormone levels.

Going back to see her as period not come and can’t deal with all the waiting, just want to do the hormone test.

We are going to start TTC and my question is does anyone have experience of post pill PCOS? Is it true it can go away since it is the post pill? Gynecologist said I am a lean PCOS and losing weight won’t help, so at a bit of a loss here.

Still planning on losing some weight, taking Proceive, removed sugar from diet, no diet fizzy drinks etc. Running 5k each week and smaller runs throughout the week, but just don’t know what I can do.

Does anyone have any tips? I even did an ovulation test and came up blank, then next day for 3 days for high fertility then got my peak fertility, but that was 3 weeks ago and no period. Not pregnant, did a test.

I do get cramps though so just so confused. Really hoping to not need medication, but can’t see other options.

Any advice at all is welcome, particularly anything that’s helped you, what medication is best etc. I’m 27 if helpful.

I have (had?) What I believe to be post pill PCOS. Like you everything was normal and regular before going on the pill. When I came off it I had no periods or anything. Scan showed cysts both ovaries and hormone test suggested PCOS as well.

I'd recommend infolic alpha supplement, increasing protein intake, and magnesium supplements too (apparently the pill can strip your magnesium levels).

It is weird though you had normal periods for a while then not.

Sorry, should also have said if you are in healthy bmi weight range probably don't try to lose weight; getting fewer calories than your using basically tells your body that there's a famine going on and you can't get enough food to support a pregnancy and it'll try to suppress ovulation which is the last thing you want.

I needed clomid to get pregnant with PCOS (both times)

If you are carrying any extra weight try to lose it as that can help.

That’s really helpful, thank you! I have heard a lot about infolic alpha and also seen the one sold by MyOva. Will get one of those!

How are you doing now? Have your symptoms got better over time being off the pill? From what I’ve read, doctors don’t really believe in post pill PCOS, but have seen it talked about online so it’s definitely real. Can’t believe it happened to me when I was on a low dose as well :/

@LavenderSweetPea forgot to tag you

I have lean PCOS and my cycles were always a bit long.

What worked for me to conceive:
Inositol (so the infolic would work but tbh I just ordered a huge bag off My Protein)
Cut down a bit on carbs but don’t go keto or anything, just be sensible
Upping resistance training and getting daily steps in
Taking vitamin d, vitamin c and zinc.
Having lots of nuts and seeds with breakfast.

I conceived third cycle trying - good luck!

I started fertility treatment with leteozole after nearly a year off the pill which worked to bring back my cycles and I fell pregnant but lost it early on.

After that I stopped the treatment and tried the infolic Alpha and other stuff I mentioned, my cycles did return after a couple of months of that and I went back for hormone testing at that point which came back normal. The GP suggested that I may have post pill syndrome PCOS but said he couldn't give it as a formal diagnosis as it's not recognised by the NHS so he referred me back to fertility services. We ttc without the leteozole while on the fertility waiting list and I fell pregnant the second cycle of trying - I had an early scan at 6w and while I was there I asked them to check my ovaries for cysts and apparently they were nearly all gone so that's even more strange. I'm 26w today with the pregnancy and so far so good. But honestly worried about whether my cycles will ever come back post partum! Either way never going back on the pill again, I was also on low dose gedarel.

@LavenderSweetPea thank you so much, so sorry to hear what you have gone through, but so happy for you and your pregnancy :)

is the infolic alpha the one in the sachet packet called infolic alpha or is it just anything with Myoinositol in it?

@LavenderSweetPea sorry, also just wondering, did you use ovulation tracking and did it work for you?

I have the below results from clear blue, but didn’t get my period in Oct. Thought it may be coming as was getting some pains but did another ovulation test as had an idea it could be that, and I got a flashing smiley (high fertility from FMU today). Do you think I’m actually ovulating or is it unreliable?

October - ovulation tracking

9th negative OT
10th HF
11th HF
12th HF
13th HF AM, peak fertility PM 15:45

November - ovulation tracking

4th Nov negative OT
5th Nov negative OT
6th Nov HF

@Winterwonderland1 I specifically bought the infolic alpha from fertility family in the little sachets - they make a big thing of it having this extra stuff that means you can actually absorb it, apparently lots of people can't absorb regular inositol. Haven't a clue whether this is true or just marketing spin so you can spend extra on it...

It was the one recommended to me by an NHS fertility nurse

@Winterwonderland1 the honest answer is it's not possible to ovulate and not have a period within about 14 days give or take (unless the ovulation results in pregnancy of course) so that peak fertility you saw in October can't have been ovulation or AF would have arrived by now.

This having been said I've never used the digital ovulation tests so I don't know much about them apart from what I've read on here, but doesn't a solid smile mean positive LH test/ovulation, flashing just indicates it might be coming? Also, just check the instructions - most ovulation tests shouldn't be taken with FMU (although perhaps the digitals are different).

I used the easy@home LH ovulation sticks and put them into the premom app to get a score, I then also tracked bbt to see if I was getting a temp rise following a positive test. I found this very reliable got confirming ovulation. I will say my lh peak with the sticks was never that strong compared to what I've seen other women get, but they did go just positive, and clearly that was enough to ovulate for me.

@LavenderSweetPea thanks so much! I will have a look into PreMom. Did you take anything else with the sachets? I am using Proceive at the moment so not sure if I can switch or take both.

I don't see why you cant take the sachets and proceive at the same time. I was taking the pregnacare conception tablets as well as the infolic alpha.

Not sure post pill PCOS is a thing, you would've had it before and basically the pill just masks it (hence why you'd have a regular period) so basically the "period" isn't a true period it's a withdrawal bleed from the break in the pill.
I have PCOS and have done a lot of research on it and it's important to find out if you have got insulin resistance or not.
I had very irregular cycles for years and took me 18 months and IVF in the end to conceive my first child. My periods are regular now but I am 2 stone lighter than pre pregnancy and we are trying for a second. Taking a good multivitamin can help and also inositol is a great supplement but do your research first (on doses etc).

@Swirls346 thanks so much, that’s really helpful. For me, my periods were regular and normal from the age of 12 until I went on the pill at 24 with no PCOS symptoms. I was on it for 3 years and then when I came off it in Jan 23 got my periods back but longer cycles until Sept 23 this year, which is why I think it’s post-pill PCOS as it just doesn’t make sense.

Trying to wait until my period eventually comes to do the blood tests but think when it’s been 3 months (mid Nov) will just do them anyway.

Gynecologist advised against trying to lose weight as I’m healthy BMI but I am making some healthier choices and losing a little but need to discuss more with her as well.

So glad to hear your periods are regular again :)