PCOS

Note: This is currently a stream of consciousness, and I’ve busted my left index finger.  Apologies.

When I was 13, I was diagnosed with PCOS.  This basically means I have cysts on my ovaries, and symptoms can present in a variety of ways – from weight fluctuations to hair and acne issues, to the inability to conceive.  I was initially diagnosed after an ultrasound following complaints of heavy (14 days) periods, excess hair, and unexplained weight gain.  I was put on Dianette, a birth control pill, but eventually came off it as it was ineffective, bar taking a few rows of hair off my temples – the one place I didn’t need it to go!

At 17, I joined my first PCOS support group, and was shocked to realise that the majority of women with PCOS did not know how to tame their symptoms.  Some had become obese, others hairy, and several had become severely depressed as a result.  Now off Dianette, I sought non-chemical regimes to help me function better.  I switched to a Low GI diet (which is more straightforward to follow than you would think thanks to these books), which has helped to make me less sluggish and feel healthier, despite no physical effect.

Feeling frustrated about my hair again, in 2004, I tried Yasmin, which I stayed on for my entire University life.  It seemed to do something proactive – hair took longer to grow back once removed, and most of it came back finer and almost unnoticeable.  Combined with having to do things for myself – carrying my shopping home every week gave me a great cardiovascular workout, and regular clubbing nights and living on a shoestring certainly helped me along the way – things were on the up.  Well, apart from regular and severe bouts of depression, which came unexplained most of the time.  I didn’t want to come off Yasmin – which according to books, the internet, and other sufferers was more than likely the cause of it – and it has been shown that St John’ s Wort, the herbal alternative, does not interact well with the pill (Collette Harris, 2003), I decided to steam through it for the greater good.

I kept an active interest in my condition, wanting to see if I could improve on my progress, through my university life through to graduation, but earlier this year, I experienced a sharp downturn:

For a few years I’d been taking Yasmin …. To start with, I saw improvements, but they were mild, and didn’t really improve anything long-term. I was, however, putting on weight with it, and found that I was starting to experience some male-patterned baldness. I stopped the pill a couple of months ago, and still feel as though my hair is thinning. Today I found a slight bald patch on the side of my head….

I made an appointment in March of this year, and saw a doctor who told me she’d refer me to an endocrinologist…

I phone back 2 months later to find that NOTHING WAS DONE.  After two weeks of further phonecalls, I got an appointment with another doctor, who ran blood tests and said to come back in two weeks.  The receptionist booked me in for 4 weeks…….my next appointment is on the 26th of this month.  I hope things move fast, before this becomes too noticeable.

I didn’t give a shit about my weight or mood swings anymore – I just didn’t want to, and didn’t think I could live with, being bald.  I went to my appointment on the 26th armed with a list of possible solutions gleaned from my cyst sisters (including Metformin, Spironalactone, Minoxidill, Finasteride, Saw Palmetto), all of which were briefly checked in a medical dictionary and dismissed as being “for men” and “too dangerous to prescribe” and besides, she’d “seen too many people come back disappointed”.  I insisted that these had been proven to work for thousands of women across the country, and had done lots of research, and wasn’t it worth a try?  An endocrinologist appointment at St George’s was squeezed out of her and I was prescribed contraceptive number 3, but I fear that I – along with most of the women I have spoken to – will have to seek private help.  I have around 2/3 of the hair I had at Christmas, and want to catch the cause before it gets noticeable.  In the interim, I have begun using Nioxin System 4.

I’ve wanted to publish something about this subject for some time – 1 in 10 women have PCOS, and a sizeable chunk of cases are ignored by doctors, despite the protests of their patients.  Most are told to “go and lose some weight” or “come back when you want children”.

I will at least try to track developments here.  If this becomes too encumberant i will split it out to another blog.

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8 Comments

Filed under Life, PCOS

8 responses to “PCOS

  1. nina

    hey girl

    i am on your side so keep going with spreading the word and if you need anything just email me ok i’m a fellow pcos sufferer you can find me on verity as firefighter ok

    xx

  2. MewMew

    I started drinking spearmint tea about a week ago. My main problem has been thin hair but also I have had lots more body hair and facial hair than is normal. I was tested for PCOS a couple of years ago as my testosterone levels were too high… nothing, luckily. I was given an oestrogen/contraceptive patch which is one of the few contraceptive which doesn’t disagree with me, and have been using it ever since.
    But this didn’t really help my thin hair. I would scrape my hair up into clips and use the long hair to cover the problem at work, then spray it solid. Of course this was not a good solution as it left me at risk of traction alopecia and the hairdo hurt as if I’d used weaves. I have taken a month of work and in this time I have done quite a lot of internet research into causes of hair loss. One thing that 3 doctors and one consultant had totally failed to mention was that when testosterone leaves the body it converts to DHT, which either binds to oil or follicles, causing acne or hairloss. Eureka! So I searched for DHT blockers and found that saw palmetto is one of the most effective. I also found that olive oil cleans the follicles, allowing regrowth. (Seems odd I know, but has anyone ever removed temporary tattoos or plaster-marks with oil? Think about it…) I now use olive oil topically every 2 or 3 nights (I leave it in overnight and wash out in the morning), started drinking spearmint tea ~(actually it’s Dragonfly Moroccan Mint Green Tea, with gunpowder green tea and spearmint… and though it smells a bit toothpastey it really is quite nice and quite easy to drink 2 cups per day) I’m taking 320 mg saw palmetto (I bought it, £3.99 for 30, not bad- but I believe it IS available on prescription!) and every now and then I’ll have MSM or ginseng (excellent mood-lifter when you’re feeling low in yourself) as well.
    Seriously, ladies…. I have noticed a BIG difference in two weeks!
    Unbelievable I know… but having not cut or worn my hair down for TWO YEARS… Yesterday and today I straightened it very carefully and felt like it looked ok for the first time! Well ok; I’m not quite ready to parade around with my hair flowing… but when visitors come to the door at least I’ve not been hiding upstairs. I actually went out near my house yesterday with my hair down. This is a massive difference. My scalp feels pretty healthy already… my hair feels 100% less brittle AND I HAVE BABY HAIR AT THE FRONT WHICH I HAVEN’T FOR SO LONG…
    Also though it really should be too early to tell, I feel confident for the first time in years that I have found the right natural remedies that will not only grow my “wanted” hair back… that also I am not going to have to shave wax and pluck every day like i did have to! Amazingly, those little hairs on my chin and upper lip have subsided and my leg and arm hair growth seems to have diminished by about 50 per cent!
    I really am excited about these finds because for once they do NOT break the bank, these are remedies which are natural and they work. There is nothing worse for a woman than to look in the mirror and see how thin her hair is on top. It is demoralising and leaves her with little hope other than to find a nice wig. If your reading this because you have problems like me, take some time off work if you can and try the remedies I’ve listed. I have the faith now… I know I’m going to have beautiful hair again…. and only on my head!
    Good Luck ladies xxx

    • vikki

      I have read your article with great interest and hope. If possible are you able to give me an update on your progress, yours is the only positive experience that I have read.
      x

  3. MewMew

    Sorry, I copied and pasted my comment from another site as I think it’s relevant to you.
    I seriously recommend you try harassing you doc for saw palmetto. If she won’t prescribe it, and you have tried all your available GPs.. buy some from your health food store alongside with some spearmint tea (not as widely available as peppermint but you can buy it online) and try it. I also hear that peppermint oil applied topically can help with unwanted facial hair… there are a few testimonials on the web of men who have tried it on half their beard and said the results are staggering. I haven’t tried this myself yet.
    Best of luck hun *

    • lauzjp

      You don’t need a doctor to prescribe Saw Palmetto – it’s a herb, so you can get it from your pharmacist but it is a bit pricey. I must say it doesn’t agree with me (tastes foul, needs to be mixed with a drink methinks!) though.

  4. Chameleon

    Hi,

    A big congratulations to you on highlighting this issue.

    I was diagnosed with PCOS at the age of 15, am now 21. I was lucky my GP was very understanding and was able to get me 6 months of laser treatments for my face free at the SK:N Clinic. I noticed a huge difference, no side burns or chin stubble gave me a huge boost. I now go for top up treatments and in between use an epilator.
    I have recently started drinking 2 cups of peppermint tea daily and have noticed it has decreased the need for me to use the epilator from every day to every third or fourth day. Result! (Apparently, Iranian girls drink Peppermint/spearmint tea from a young age to deacrease unwated hair growth)
    I have been looking into herbal treatments now to accompany the tea and epilation. Once I start using something and if i notice any differenec i will post back.

    To all the girls out there, persevere. We all have different genes and react differently to different treatments, tryin gand testing is the best way to find what works best for you.

    Good Luck =)
    xxx

  5. Thank you for the usefull article.

  6. health foods that are organice and have natural source should be the stuff that we should take ;”;

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