PCOS with no AF

Hi guys,

I seem to have a slightly unusual type of PCOS and was wondering if anyone else is in a similar situation? I do not have any of the appearance-related side effects of PCOS, but left to myself I do not have AF AT ALL. Apparently my hormone profile does suggest PCOS but I have really low levels of all hormones (oestrogen, androgens etc - this means that when I'm not on the pill I get hot flashes, migraines, really dry skin and eyes etc). I am starting Clomid soon and am wondering how it will go... Everything I have read about PCOS seems to speak about people with much higher levels of hormones and I'm not sure if it is applicable to me.

Thank you and baby dust to all!
Williaana

i guess PCOS is PCOS - we're all unfortunately gonna go through a lot of the same things - athought the low hormone profile is somewhat unusual. i have severe PCOS - and have no cycle at all either. no ovulation, no AF - maybe an anovulatory shedding of lining every 9-12months. it sucks - especially when TTC!!!!!

Clomid is something that works for some, and not at all for others. unfortunately for me, it was a complete bust - but for others it has done the trick and forced them to ovulate - tehre are quite a few Clomid bubba's on BB

god luck

The problem with PCOS is the "syndrome" part of the name. Basically means that there's this big group of symptoms, and we seem to get a random assortment of them... So no case of PCOS is quite like another. Kinda sucks, because we know we always compare ourselves with others and there's the frustration of "it worked for XXX, why won't it work for me?"

I'm reasonably similar in that I have none of the outward physical symptoms of PCOS - not overweight, never had acne in my life, no hair problems... but there's the complete and utter lack of AF and no ovulation at all. I'm not sure how my hormone profile rates, but I do know that my glucose tolerance test showed me up to be a surprisingly bad case of PCOS that startled my FS...

When it came to clomid - it just didn't work for me. I suffer from fairly strange pre-ovulation anxiety - every time my estrogen levels rise I get really quite anxious. I suspect that it was that anxiety that became so bad my body went into a state of being far too stressed to maintain a pregnancy so ovulation failed. My doctors considered the impact of the clomid on my state of mental health to be far too severe to try it again... fortunately, my FS has another drug that works in a similar manner which is getting me to ovulate fairly consistently.

Another sucky thing about PCOS - there's no way to predicat whether clomid will work for you besides jumping in and trying it. But the comforting side of things is that if it doesn't work, there are other options out there.

Good luck with everything.

BW

Hi Williaana,

I don't have any advice but am posting because your post made me think... that maybe PCOS is my problem too...

I have had secondary amenorrhea since June 06 when I stopped taking the pill.
My ovaries are not cystic.
I'm not over or under weight, no probs with excess hair or acne.
I get hot flashes.
All my hormone levels are really low too.

Interesting!
I had always assumed that because my pelvic ultrasound showed no cysts on my ovaries that I didn't have PCO or PCOS. But maybe this is not the case??

Can I ask how your doctor diagnosed you?


ETA - BW I never realised that we had a similar profile too!

My specialist always referred to mine as PCO - without the syndrome part.. as I had none of the 'classic' PCOS things such as weight & hair.

My AF was always irregular, and just as we made the decision to TTC she disappeared altogether for 10 months! Not sure where my bloods rate either, but it did relate to PCO(S) with androgens and something else (LOL - sorry.. can't remember!). Anyway, my OB/Gyn started me on Metformin with a view to starting Clomid (apparently Metformin can assist in Clomid working too) but when AF returned after 6 weeks, I asked him if I could just stick to using Metformin for a while, and he was more than happy with this, coz of the risk of multiples with clomid. Anyway, I was pg within 2 cycles.

Good luck with TTC :)

It's possible to have ovaries that appear polycystic, but not have the syndrome. Just as it's possible to have the syndrome but have ovaries of normal appearance. The polycystic ovaries are just one of the things that appear in the giant grab bag of random symptoms.

I'd always had irregular AF, so when we first started TTC I was ready to jump on things very early on. I'd had my hormones checked out after only a few months on the pill and at that point in time everything was only slightly out of normal limits, just a slight excess of free androgens. By the time we'd got to 12 months off the pill and had walked through the door of the IVF clinic, everything was much more significantly out of whack. It's really worth getting a glucose tolerance test done to see if there's an underlying insulin resistance - this is apparently the underlying cause of PCOS (the syndrome). That's where we discovered that my PCOS is strangely severe despite physical appearance.

BW

Thanks for your responses guys, the world of PCO/S really is a big diagnostic mess isn't it?!! It's great to find a group of people going through similar things.

Mrs P, my diagnosis was a bit long winded. Basically didn't have periods as a teenager (1 a year at the most) then went on the pill for years. Went of the pill for a year and had no AF. The GP did blood tests and was completely puzzled by the low hormones. Then she sent me for an ultrasound, I apparently have around 30 cysts on each ovary, not sure if that is a lot or average for PCOS. I was originally told I had PCO, then went to a specialist who looked at me and also said there was no way I had PCOS, then did more blood tests and said that actually I did!! I think as Butterfly-warrior said you technically can have PCOS with or without polycystic ovaries - further evidence of what a confused syndrome it is!!! Can I ask if you have tried Clomid or similar?

It sounds like we all have really different responses to the various treatments. Big good luck to everyone that we find the one that works for us!! :)

Thanks for your responses everyone. It's good to know there are other people going through similar things.

Mrs P, I actually do have lots of cysts on my ovaries (about 30 on each I think, not sure if that's a lot or not?) that's the thing that made my Dr decide I had PCOS - as Butterfly Warrier said, I have heard that you can be considered PCOS with or without actually having cysts on your ovaries though...good luck with getting to the bottom of your situation. It's so frustrating isn't it? I found that Drs didn't even want to know about it until I hadn't had AF for almost a year after coming off the pill.

Thanks for sharing your good news story Liz, it's always good to see light at the end of the tunnel!

I have really high levels of androgens and low levels of other hormones. In the 3 years DH and I TTC on our own I had no AF. I went on Metformin and had mild spotting then a very painful AF visit on my first cycle of Clomid. In my whole life I have had less then 10 AF visits of that.