Tuesday, 24 May 2016

PCOS and Me

Sometimes I worry about oversharing on my blog with 'too much information' but today I'm going to write about something that has been affecting me for years. So if talk about periods and related 'women's stuff' makes you uncomfortable, you probably don't want to read on.  

Last week was an emotional one for me as after years of back and forth to the Doctors with period related problems, I finally got a diagnosis for polycystic ovary syndrome, or PCOS. 

Within a short time of my periods starting at 11/12 they became heavy and irregular. As I got older, they became more of a problem and more painful, so much so that when I reached my early 20s my Doctor put me on the Depo-Provera injection. What a revelation that was! My periods completely stopped, I saved a bomb on sanitary protection and overall I felt pretty good. The only downside was weight gain (although I now know that is likely to be a combination of the injection and PCOS).  When I turned 27 or 28, after doing some research and chatting to the Doctor, I decided to come off it as I was worried about being on it long term with the risk of osteoporosis and I was also worried about fertility. It can take 6 months to leave the body and I was worried that if we decided to have children that I would have difficulties.  

So of course, when I came off the injection my periods started again, as did me visiting the Doctors for painkillers. Before I became pregnant with E, I had several pretty horrific periods where the pain was so bad I was left doubled over and now that I have experienced child birth, I can honestly say the pain was like contractions in early labour.  I was sent for a scan which was clear but nothing further was done, which I think was a combination of me not pushing things and my Doctor not being particularly sympathetic towards the problems.

Cue to age 34. A midwife had told me that childbirth often helps to resolve any issues with periods but no such luck for me, the problems have just increased and a few weeks ago, after another particularly bad one I snapped and went to see one of the female Doctors at my surgery. As soon as I saw her, it felt different. I told her the various problems I had been noticing and voiced my thoughts about PCOS and rather than being dismissive she agreed.  These are the symptoms I spoke with her about:

- My hair. It has always been thick but in the last six months I've noticed I'm losing a lot of it.  I wake up in the morning and its over my pillow, the shower drain needs emptying every few days and I frequently have to remove a build up from the hoover. So alongside the influx of grey that has started to appear, I've started to feel very self conscious about it. Tonight I coloured my hair and it was coming out in my hands as I was rinsing it. The colour is slightly darker than usual and it has completely highlighted how much hair I've lost at the front. I'm hoping I can hide it a little by pinning some of my hair back but with where it is, I just don't think I can hide it. 

- Hair on my neck and face. I've always had hairy arms and lower abdomen and I can shave my legs in the morning and have stubble on them by evening but over the last few months I've noticed it more on my neck and face, particularly the chin and jawline.  The tweezers have become my new best friend.  

- Irregular and painful periods. The longest I have gone between them is 18 weeks but on average its 3-5 weeks.  That would be fine except I get the cramps and pain inbetween and when I am on, I feel awful for days. I wake up with stomach cramp and backache in the night and I can't get comfortable.

- My skin. Acne is something I've always struggled with. Whilst it isn't terrible at the moment, I do get break outs around my chin and jawline. I had hoped spots wouldn't be a problem in my 30s! 

- My weight. Weight loss is always a struggle, it fluctuates by a large amount (as much as half a stone over the course of a week) and and I gain it rapdily. To give you an idea, I've gained two stone over the last year, despite me being more active than I have been in years.

-Light headed/dizzy spells.  This has been ongoing for bloomin' ages. I keep getting random spells with no rhyme or reason to them. I can be sat still, walking or stood still. 

- IBS. I've also been diagnosed with IBS and my symptoms worsen significantly in the run up and during my periods with bloating, cramp and diarrhoea. Recently I've been tested for inflammatory bowel disease and coeliacs. I've also had queries raised over the gallbladder due to some of the pain and discomfort I've had but that's been put to one side. I'll be perfectly honest, my Doctor hasn't been all that helpful in this regard.

So, what is PCOS? Its a common condition that affects how the ovaries work and release eggs (see the NHS website for info).  There are three main markers for PCOS: irregular periods, excess androgen and polycystic ovaries (where the ovaries become enlarged and contain fluid filled sacs - despite the name, you don't actually have cysts) 

I was sent for some blood tests which confirmed that I had two of the markers - irregular periods and excess androgen. I also have low levels of SHBG (sex hormone binding globulin) which is a protein in the blood which binds to testosterone and reduces its effects.  

During my diagnosis it was explained to me that PCOS can lead to additional health problems as I get older, particularly heart disease, diabetes and endometrial cancer. We have a rough plan in place which essentially involves me continuing to try and lose weight. If this continues to be a struggle I may be able to get some help with this in the form of medication.  If I don't have a period for three months, the Doctors will have to prescribe me progesterone to trigger a bleed, following which I will have to have a scan to check the thickness of my womb lining, which all sounds a bit of a faff to be honest, but obviously essential. I also have to have an annual blood test to check my cholesterol and for signs of diabetes. 
PCOS and Me
If you know nothing else about PCOS, you will likely know that it is one of the biggest causes of fertility issues in women. Whilst I had no difficulties in conceiving E and T that may not be the case if we were to try for a third.  This is something that especially concerns me as it is something we have been talking about recently (mostly me at the moment, it has to be said) and I don't think I could make my peace with the decision being taken away from me. 

I must admit that I did get quite emotional talking to the Doctor as I have been going back and forth for help for years with no luck and I just don't understand why it wasn't diagnosed sooner. So much has made sense since then. 

Since the diagnosis I have tried to read up a little, as you do, and have made another appointment to go back and talk about a couple of other issues that I have since discovered are probably related. Apparently another long term issue can be sleep apnea, because of the issues I have concerning sleep, I would quite like to look at his more in depth - I can sleep all night (when the kids let me!) and wake up feeling as though I haven't been to sleep at all.  My Fitbit tracks sleep and whilst this may or may not be entirely accurate it does show how restless I am through the night, which has left me wondering what is causing this, more so on the nights the girls let me sleep through. My energy levels and mood are often low and I'm sure this is related to the sleep issues.

I've written before about trying to lose weight and my attempts at Slimming World.  It feels incredibly daunting to know I need to lose so much weight, not just for vanity but for health reasons too but I know I need to keep trying and that help should be at hand.  

Do you have any PCOS related tips or blog posts that you would like to share with me? All help and advice gratefully received. 

For further information about PCOS:
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3 comments

  1. Well done for sharing this! I have no experience of it myself but it should be something we talk about. I wouldn't ever worry about over sharing information on your blog, in my opinion it's the whole point of blogging :) #justanotherlinky

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  2. It's great that you have shared this as it will help others! Thanks for linking up to #justanotherlinky xx

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  3. Well done you for sharing this lovely. Great way to let people know more about it. and bless you lovely Hope you're ok.
    Thank you for linking up to #justanotherlinky

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