Polycystic Ovaries – a hair loss diagnosis at last


Its been well over a year since I last posted, and its actually over 2 years since I weaned myself off Dianette. Time really flies doesnt it? If you’ve read my blog before you’ll know that I had good results for my alopecia on a mix of Dianette and Rogaine for about 3 years. Although at about the 3 year mark the improvement slowed down and stopped. I came off it because I knew at some point I’d want to get pregnant and since it wasnt really working anymore I thought it was a good time to stop.

I’ve had to read back over some of my posts on here and I had actually forgotten how irregular my periods were since stopping. But things did slowly improve but only a bit. I was eventually having a period every 30ish days at least. But in the last six months its been getting up to 34 days in cycle lengths and the periods were sometimes lasting 10 days. Not good.
My hair is no better if slightly worse. But I still have enough hair to clip my topper hair onto so I’m thankful for that. My acne has continued and if i dont have a spot somewhere on my face, I’ll at least have a scar from one spot or another. Facial hair seemed to be on the increase as time went on after stopping and I was having to pluck more.

To cut to the chase – my reason for posting after all this time – last month I was diagnosed with Polycystic Ovary Syndrome. But its not all doom and gloom! At least so far, anyway. I’ll explain..

We started trying to conceive in March 2014 I think. In Aprils cycle I started monitoring ovulation. I ovulated, we did “the dance” regularly around this time. Two days after the ovulation I noticed blood streaked vaginal mucus. A few days later I had sharp stabby pains on my lower right side perhaps near the ovary. As I’m sure you’ll know, the internet is full of conflicting information. Apparently this can be ovulation bleeding or implantation bleeding / pain and because of this I though I could be pregnant. It wasnt though.. I think.. Certainly I never found out what it was. Well the pain continued and I saw both a pharmacist and my GP. Both diagnosed an early miscarriage. Having since checked my dates, I dont think thats likely as it was far too soon for me to be pregnant. I was sent for a scan just to double check things and the sonographer saw polycystic ovaries but no actual ovarian cysts.
I never realised the difference before. Ovarian cysts are outside the ovary. Polycystic ovaries are smooth on the outside but have something like frog spawn on the inside and these too are called cysts. I also had a very dominant follicle (strangely named because its nothing to do with hair) inside the ovary – a very good sign for ovulation.

I had to go back to my GP to discuss it. But I’ll get to that in a minute. Years ago when searching for a diagnosis for my hair loss, i had hoped PCOS was the reason and even suggested it to the various doctors I saw. I also had the facial hair and acne which can indicate it too. I was very naive in hoping that I had it because I never realised what a nasty condition it can be. Anyway I was told that as all my blood work was fine and that my periods were regular (but i was on BCP, of course they were regular!), then I didnt have PCOS and was still searching for an answer to my hair loss. Back to the present and the GP told me after the ultrasound that PCOS doesnt always show up in blood work. She also said that you can have polycystic ovaries but not necessarily the syndrome. But because of my hair loss, acne, facial hair, irregular periods, low and behold I have PCOS!

Another indication is body shape. She said that women with estrogen dominance have fat collecting around the hips and thighs. Women with testosterone dominance (PCOS women) collect fat around the middle, and I certainly do. After my 5 stone weightloss a few years ago, my tummy shape remained the same – and a strange shape too. I have always felt that there had to be a reason for it and my mum has the same shape as well. Where as most women have a smoothish shape (whether flat or pot bellyish) I have one bulge above the belly button and another below. Think of a B shape if you were to look at me side on. Well apparently this can be a classic PCOS shape.

When talking about PCOS symptoms I should also mention the breast pain I was having. It was on the left side, sometimes underneath, sometimes going up to the left side. I ended up having a mammogram which was the scariest event in my life so far. Overdramatic? Well the process itself was fine but i found the possible result so frightening. But all was fine, panic over. Breast pain can be another symptom of PCOS too.

I have to say that on the PCOS diagnosis I concluded that I must have it fairly mild because an old colleague of mine with it would have periods going on for months at a time. She really suffered. But having told a friend I thought mine was mild, she said I was mad, because of how its affected my hair. Fair point. But one of the worst symptoms if you want to get pregnant is that it can affect ovulation. I feel so fortunate that I am ovulating, but I’m 35 this year and not getting any younger. I worry that I might stop ovulating if it gets worse. Having said that I’m seeing a nutritionist for it so things should get better, not worse. More on this shortly.

I’ve had no further blood tests for the PCOS. The GP said blood work isnt necessary for a diagnosis when you have all the symptoms. Well I know that insulin and blood sugar issues go hand in hand with PCOS. My nutritionist said I was going too long between meals and advised me to have healthy snacks to raise my blood sugar. I’ve done that for one month so far and the result being that my cycle actually lengthened rather than decreased, which was the aim. She also put me on saw palmetto and a liver support supplement and she said it may be too early to see results on the cycle lengths. The facial hair has decreased though! But I do wonder if I should have my blood sugar / insulin resistance looked at. I dont want to be wasting time.

Something that comforts me though is that my nutritionist says that every hormonal problem can be solved and erradicated with diet and herbs. I hope so! I’ve certainly read that one month someone can have polcystic ovaries showing on a scan and a few months later the ovary doesnt have anything wrong with it at all.
Being diagnosed brings me back to reading horror stories of the lasting effects of dianette and it did occur to me that it could be the reason for all this. But in actual fact, for me I think not. As a teenager I had bad facial hair – a monobrow and upper lip. I used to be bullied for it. So i think its always been there, lurking in the background and masked by my many years on BCP. And just now its finally showed itself in order to be diagnosed, so to speak.

Given that PCOS is linked to poor diet and exercise, had I not lost all the weight and started eating healthily, i might not be ovulating by now. There are meds for it though, metformin and clomid to name two.. We tried to conceive for two months and have stopped for three months since the diagnosis to try to get things a bit more regular and next month we’ll start again. If it goes on too long without results, I’ll see a specialist.

We shall see what the future brings!


Happy New Year

For Christmas I got a period that was bang on time. The first in a year! I’ve been taking Evening Primrose Oil for the last few months so I don’t know if that’s what did it or if it was gonna happen anyway. But regardless I was very pleased.

If you remember from the start of this blog, something I was experiencing whilst in Dianette was vaginal dryness and lack lof libido. And I don’t know how much of that was due to Dianette because I also had very bad vaginal thrush (meaning penetrative sex was impossible) and a candida infestation. Oral contraception is linked with candida so its probably a case of both. Anyway in the past couple of months enough of the vaginal thrush has gone meaning we can have sex again – the pain has gone and so has the dryness. Plus my libido has sky rocketed! I’ve also been on an anti candida diet for 9 months now so a combination of that plus being free of dianette for a year has worked very well for me.

But neither has done anything for my hair. Its just the same was it was when I posted the last photo of my bio hair.

My second topper arrived yesterday, just the same as the first (current) one and I plan to get it cut and styled soon, just like the current one.

Happy Halloween!

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Like my white wig? I bought it on ebay for £5 and its great. It was supposed to be a Lady Gaga wig according to the description but I coloured some strands in with black marker pen.

Well I think this months cycle was 5 weeks long, which is good for me. I only think it was that long because I was keeping track of things on an app on my phone called My Days, which is a calendar where the days are colour coded according to when your period started, when it ended etc, as well as when you might be ovulating. But yesterday my phone crashed and I had to reset it so I lost everything.

It was very heavy though. During one 8 hour shift at work i went through 4 tampons. That is so unlike me. Cramps too, but nothing major.

I’ve been having alot of acne over the last few months which is something I’ve not really had to worry that much about so far in my life and I try not to draw too much attention to it now but i definitely have it. It exists now. Although its probably not what you’d call a major acne problem. Cod liver oil definitely seems to help though.

I’ve been finding more hair in the shower drain too recently. I dont know if thats because of my period. I’m not sure if i lose more hair during those times. But otherwise i’m still hoping that i’ve pretty much lost as much as i’m going to lose. I’m very grey at the moment, and I have alot of roots. I’m trying to grow out the colour that was put on to match my topper, so eventually my own hair colour should match my topper colour perfectly.

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This is my hair today. Note: Its not taken with the same camera or in the same room as the pic below.

I also want to say that I have been getting alot of traffic to this blog recently and I am very pleased because my aim of this blog was to help those going through similar experiences to me. And as well as these blog posts, you may find the comments on my About page very helpful https://quittingdianette.wordpress.com/about/

Still irregular

Hi 🙂 Its been a long time and I have to say that I am still having irregular periods. After all this time. I waited 9 weeks, then 5 weeks, then 7 on my last cycle. I’m having a smear test on Wednesday so I intend to bring it up with the nurse. I’ve been off the pill about 10 months now but i’m kind of expecting her to fob me off by telling me to wait 12 months.

So this photo was taken August 2012

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I’d say thats close to being as bad as it was when I wore wigs the first time around. One major difference is that i’m looking after the lengths better now. Last time i hated my hair because of the loss so never took any care of the lengths.

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Well in April I decided I’d had enough of struggling with my hair and not knowing how bad it would get so I ordered a topper from Galleryofwigs.com and I can honestly say I wish i’d bought one earlier. Toppers, for those who dont know, are effectively half wigs which sit on top of your existing hair, on the top of your head and clip on at the front, back and sides. YOu still have to have enough hair around the back and sides for it to work and although my lengths are rubbish, its still good enough for a topper because you dont really see them.

You could see it as me giving up on my hair, but I cant see it improving now. Clearly it was the Dianette that gave me the regrowth, not the Rogaine because i continued with the rogaine after I quit Dianette and it did nothing. So I quit that too, because I saw no point in rubbing chemicals into my body when its not doing what its supposed to. I really see wearing extra hair as a positive step because its made such a difference to my life.

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Well after writing the last post and assuming I wouldnt have another period for another 3 months – it happened! Just a week after it was due!


Time for an update!

My period finally came on 17th May. That was 3 and a half months after the last one. I am yet to have my period this month, which was due 7 days ago. Officially I finished my last dianette pill on Feb 11th – only 4 months ago. Seems longer to me.

I have to say that in April I stopped all vitamins and herbs that I was on for regulating my periods and I also quit Rogaine. The main reasons for this are that I began began the candida diet, which requires many other vitamins and herbs and I really couldnt be on so many. Plus, I also began using toppik to cover up my thinning area and I had previously discovered that rogaine liquid plus toppik equals alot of itchy scalp.

Ok so I’ve basically given up havent I.. I guess so. For what, 7 years maybe I’ve used rogaine in both liquid and foam forms (at different times) and have always sworn by it but I believe it stopped working when I stopped taking dianette. Or what is possibly more accurate (although I cant prove it) is that the rogaine isnt what helped me at all – it was the Dianette that produced all the regrowth all along. I will never know because I started both at the same time.

So current side effects from being synthetic hormone – free. Well I still have to wash my hair more often than on Dianette. I have more hair on upper lip (more than the last time I posted about it) to the extent that there is too much to pluck now. But i’m just bleaching it instead. I am very spotty. But how much this is connected to this I cant be sure because you can get acne on the candida diet, where the toxins come out through the skin. I am hoping its because of the latter because I dont want this to go on too long! I was shedding about double usual in the shower but over the last week or so that has calmed down.

I think thats about it. In 3 months or so if my periods are no more regular I will go to the doctor and ask to be referred to a specialist on hormones, which is someone I have wanted to see for a long time. All my tests have been fine but I have had facial hair since about the age of 13 despite regular periods until now. Even just that cant be right, surely?

“Is it really getting worse?”

Its a fair question, seeing as I’ve panicked before. Bellie asked this after my last post. I’ve compared photos and there really doesnt seem to be much in it but I’m sure it is worse.

Here’s the most recent one from May 2012:

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And one from July 2011:

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Not much in it is there? What I notice from looking in the mirror is that the hairline under my fringe is standing out even more now because the hair behind has thinned out even more than before, so the hairline looks thicker / stands out more. I also see more scalp at the back of my head through looking straight on and the lengths / ends of my hair (its around shoulder length) are more see through than usual. If i were to have a bob cut or even so short that its spikey, it would probably be half decent with some toppik.

I’ve ordered a topper and a wig. I’ve had enough now. Even if it doesnt look much worse in the photos, I believe it is, but I admit, through my past panics, I cant be 100% sure. But i would say i am 95% sure. Plus, i dont know how bad its going to get so I want to catch it now before I cant bare to leave the house. I cant remember if i mentioned it but I got hold of some rogaine that wasnt hurting my scalp and I’ve been using that for around 2 months but I’ve not seen a difference. I believe this is due to the lack of Dianette. Maybe I am shedding slightly. Theres a bit more in the shower drain and the odd hair on my shoulder but nothing major.

I should also mention that I believe my Candida infestation got worse this year which probably does not help my hair but I am on a candida diet right now and until thats over, Its not gonna help my hair either, because its a detox diet that expels all the nasty toxins and some people experience hairloss with that.

As for my periods, still nothing. But that’ll be partly down to the candida diet.

My Mum has finally agreed that I’m not going overboard by buying wigs again and that makes me feel better. Until recently she has always been of the opinion that “its ok”.. “it looks fine”.. without ever admitting anything. She was the one who helped me get a diagnosis in the first place so its not like she’s ever denied me having a problem. She just doesnt want to see me having a problem again. But now she admits it, I actually feel better. It wasnt so much by seeing the top of my head, but how see through the lengths are.

She asked me how I’m not panicking about it and I wonder that myself. I think I’m just looking forward to looking and feeling better about myself again by way of wearing toppers and wigs. I’ve ordered a topper that will blend with my own hair but I have concerns about that because my hair isnt that great to blend with. On the other hand I feel better about a topper than a full wig. But we’ll see when it arrives.