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Meet Fiona the Fibroid

I’ve been getting to know about my recent addition to my list of maladies.  I’m assuming what I have is actually a collection of fibroids.  Perhaps the collective noun should be a Fiona of Fibroids?  Fiona is a benign tumour in my uterus made up of muscle and fibrous tissue.  Fibroids are linked to oestrogen and tend to increase in size when oestrogen levels are high and are known to shrink when levels decrease.  Fiona is common – it is thought that around 40% of women develop fibroids at some point in their life.

The good news is that, depending on where Fiona the Fibroid is and how big she’s gotten, I may not need a hysterectomy.  There is a much less invasive treatment involving a local and a catheter in an artery that will cut off the blood supply to Fiona and she can just waste away.

Of course, I may not have a choice in the matter.  Fiona may be up to no good and could give me no end of pain until I beg for a hysterectomy.

It’s been 2 ½ weeks since my surgery and, as far as I can tell, the symptoms that made me want the surgery in the first place have not diminished.  I’m still tired all the time.  I’m in pain nearly every moment of every day – granted at the moment I’d call it a 2 out of 10 but the point is that the pain hasn’t diminished.  My pain increases after a bowel movement, urination or after fantastic sex.  I’m still bloated.  My first period after the surgery was painful but, as I was taking the massive painkillers that the hospital gave me, it didn’t seem as bad as before.  As far as I can see, there has been no great improvement in my health after my operation.

It’s only natural that I consequently feel a bit down.

At work I’ve been moving a lot more slowly than usual.  I’m taking my time with everything.  I’m remembering to not lift anything.  I’m more careful than usual going up and down the stairs.  I have to say that everyone in my office has been very gentle with me, they’re also still treating me with the same gregariousness that I’ve come to love.  They tease me but in a good way.  It makes me laugh and I know when they do it that they’re really saying “We missed you!”  It’s lovely to have great support both at work and at home.

I’ll find out more about Fiona on 17 April.

Foxy

Endometriosis Awareness

I had a back and shoulder massage after work recently.  I was lovely!  The girl that did it for me didn’t stop chatting.  The longer we chatted, the more I found myself telling her about women’s health.  In the end, I told her all about my endometriosis while trying not to frighten her.  The good news is that she’s only 20 and she’s never heard of endometriosis so I got to give her the great news that it’s out there!  OK.  It’s not great news but I felt great to be able to talk to someone new about endometriosis.

 

The sad news is she told me she has difficult periods.  I do hope she doesn’t have endometriosis!

Who have you informed lately?

Foxy

Good News

A friend of mine was complaining the other day so I wanted you to remember that I’m one of the lucky ones: I don’t have pain so bad so often that I need to take disability!  Some of my American friends are made to feel lower than dirt because they’re unable to work, because they demand medical attention, because they’re unable to pay for the constant medical attention they require.  They have to choose which medications they take even though they are told by a doctor that they need everything on the list due to financial reasons.  Don’t forget I was made to feel like a “girl who cried wolf” for over 20 years before I finally got a diagnosis!  Imagine vomiting from pain and then being told “That’s normal – stop your moaning and get on with it!”

Just because I have a happy marriage now and I’m able to hold down a job at the moment doesn’t mean that there haven’t been times when I’ve been treated badly.

I finally achieved a diagnosis (I want to say it was 2005 but may have been 2004) of Polycystic Ovary Syndrome, Insulin Resistance and Endometriosis.  Sadly, this had a number of ramifications: I was a vegetarian and had to completely change my diet.  When I told my ex-husband that I needed to start to eat meat he said “Do you have to?” as if I had a choice!

I was in a spiral of pain and depression – when I was struggling physically my ex would imply I was lazy.  His parents didn’t respect me.  When I would struggle at work I would make mistakes which lead to complaints which lead to more mistakes…  After years of being told you aren’t worth much, you start to believe it.

I had to change the way I thought about myself.  So on the one hand I was delighted to know that my pain wasn’t in my head but on the other I needed to think about my body in a completely different way: I have limitations.  This fact didn’t sink in for a number of months/years and I wound up taking a number of medications in order to get myself into some sort of order – not to mention I wanted to pretend that my illnesses would not affect my “normality”.  I took pregabalin which is a medicine that is mainly used to treat epilepsy. It works by stabilising electrical activity in the brain.  As pregabalin stabilises electrical nerve activity, it is also used to treat pain that occurs a result of damage to or a disturbance in the function of nerves (neuropathic pain).  I took metformin for my insulin problem.  I took Mefenamic Acid (prescription anti-inflammatory), paracetamol and codeine for pain.  I took laxatives for the codeine side-effects.  I was taken off birth control and given HRT patches.  I took St Johns Wort when I was off The Pill but gave it up again when I went back on it.  I took Milk Thistle for my PMS.  Finally I gave in and took prozac for the inevitable depression that I was in thanks to the never-ending pain.  I positively rattled!  I was in the position of taking so many medications that I was getting some terrible side effects and taking medications for the side-effects.

I moved jobs – from the solicitors’ firm where Helios and I met to a pharmaceutical company.  The best thing I ever did was leave law.  I think they were in the process of trying to push me out anyway.  I am a very good secretary and office administrator but, in that poisonous environment I only went from bad to worse.  The pharma company wasn’t great either but it was better than lawyers!  Ultimately I was made redundant form the pharma company just a few weeks after my third laparoscopy – in December 2008.  Happy Christmas to you!  I agreed because they gave me a generous settlement.  I could easily say that my health was a factor in their decision and I’m sure that’s why they were so generous.  I didn’t have the energy to fight it even if I did want to.  I spent 2009 going from one temporary position to another.  Financially I was a mess but things were looking up.  I came off a majority of the pills and, thanks to the most recent surgery, my pain was at an all-time minimum.

My point is that you don’t know what life will give you.  When you are given terrible news, you will probably struggle too but I know you will manage.  Until then you have to take one day at a time.

Foxy

 

Remotely Human on Boxing Day

Today I found myself standing in the bathroom – my head was resting on the wall, my stomach was pressed against the radiator and I’d already had my mefenamic acid for the morning.  I felt groggy from the pain meds and in agony – not a nice combination!  I grabbed a paracetamol/codeine tablet and staggered back to bed.  Strangely I have very little trouble drifting off in the middle of the day when I’ve had my pain meds!

Now I’m up again.  I’ve had some lunch (leftovers of course) and another mefenamic acid tablet.  I stagger the anti-inflammatories with the painkillers so that as one falls away, the other takes over with pain relief.  I’m tired and may go back to bed again.  It’s hard to know what to do next.  I’m tired – tired of the crazy lengths I go to to manage and avoid pain, tired of the pain, tired of feeling only remotely human, tired of having my head roll around on my neck as if my neck were made of a length of rope, tired of not being able to enjoy anything without organising my body around it, tired of waiting for surgery.

Foxy

Fatigue

I’d say over the past six or more months I’ve needed extra sleep at the weekends in order to get by.  I go to bed at a reasonable hour on Friday night.  I’m up at the usual time on Saturday morning.  I have an extra hour or so during the day and repeat the process on Sunday.  The fatigue has grown from just needing a nap on one of the weekend days to both weekend days.  Just before I go to bed for my afternoon naps I get the oddest sensation – I’m not exactly tired, it’s more as if I’ve already gone to bed and I’m dreaming.  Someone has switched off my brain and my eyes are showing their “no one’s home” signs.

During the week I’ve coped reasonably well without the extra sleep during the day.  Aside from PMT times, I’ve been alert and sharp.

I was a bit disturbed when my brain switched off last night.  About 8pm I was finishing off a few emails, facebook posts, etc when all my sense was switched off.  Despite being keen to watch the rest of the football game, I was unable to keep my eyes open and I dragged myself to bed at 8:30.

I can’t help but wonder if there was something different about yesterday that made me more tired than usual: I was having some sharp pain in my ovaries during the day.

Or is my body reacting to the exercise I’m getting in going to and from work?  The last time I got this much exercise it was the summer of 2010 and I was going out at 6am for a walk to and from the station and still had plenty of time to get ready and meet my friend to carpool to work.  Of course all that stopped when those horrid miscreants made me think I was going to be murdered and my mangy carcass thrown into a field…  I still occasionally think about that day but I’m not filled with dread anymore.  My home town is stupidly safe.  I rarely have to remind myself of it now.  Also, these days I carry items that would help me defend myself – nothing scary.  Sometimes I just roll up a newspaper – a jab in a delicate place with a rolled up newspaper would easily enable me to slow down an attacker enough to let me get away safely.  Don’t let the Hollywood films fool you – if you’ve managed to stop an attacker – run for your life!  Don’t stop until you get somewhere safe.  Then call the police.

Or am I not feeling myself because I need to have a period? The first day of my most recent one was 27thAugust.  I probably should have given myself one when Helios and I were on holiday in  November but I was so busy that I didn’t want to – and who could blame me really? My periods are bad enough now that I really need three days to get the worst of it out of my system and the next time I have enough time off work is at Christmas.  While I’ve got all the time off between Christmas and New Year, it won’t necessarily be a pleasant holiday.

Hanging on until Christmas may be a challenge because, aside from the curiously-strong fatigue, I am having dull pain most days, sharp pain in my ovaries at times and a slight bleed through on some days.  This after I insisted that I don’t have any blood apart when I’m getting my period…  I doubt it’s a sign of something sinister.  I’m probably still not accustomed enough to having longer and longer cycles.

When I finally get my surgery dates I’ll think about having another period while I’m off with that – with any luck I’ll be on so much medication that any more pain won’t be an issue.  (?)

It’s at times like this that I’m ever so grateful that I’m accustomed to being organised because my brain isn’t working properly. For the past couple of days, particularly in the afternoon, I’m getting that woolly-headed feeling where I’m in a bit of a daze.  I used to feel like this when I had fruit and yoghurt for breakfast and I’d wind up being in a mess for the rest of the afternoon.  However, I know it’s not my diet because I’m having my usual egg/mayonnaise sandwich in the mornings (on low-GI bread) and for lunch for the past couple of weeks it’s been turkey with tomato, green pepper, low-GI Rye crisp breads and humus.   A couple of days ago I tried a wheat pita at lunchtime with my obligatory seeds in and within an hour I looked about six months pregnant.  when I’m most certainly not!  Did I have a reaction to  wheat? Within a few hours all had settled back down again but the incident made me wonder if there is anything else that I ought to be avoiding…  I’ve made an initial appointment with a food tolerance expert to see what else I can be doing.

You may remember that I’m on a slightly restricted diet anyway due to my insulin resistance.  When I first started getting diagnosed with my many maladies, I was told I had PCOS and insulin resistance.  For the insulin resistance, I was told to limit my carbohydrate intake to 20g per meal per day; I started lose weight and feel like my old self after a month or two.  Of course, I was depressed and my endometriosis diagnosis was in my future.  My entire life needed changing in order to feel happy but the change of diet was a good start.  At that point I didn’t notice any odd bloating, but so many things on my body seem to have given up working since then that I feel a bit of a lemon!

My interest was piqued when one of the gals at work did a food-intolerance test just about three weeks ago and now she’s been following the regime and she’s looking amazing.  I don’t know how much weight she’s lost but because she’s only taking on board exactly what she needs, her body is obviously happier for it.

Foxy

My Fourth Laparoscopy

I recently went to the surgeon who gave me a number of choices; I have come to the conclusion that a laparoscopy to clear my endometriosis is the best choice for me because a hysterectomy is too drastic a change for me and trying a drug to give me a temporary menopause is generally not well received (from what I’ve read).

My first laparoscopy occurred in May 2005 and I was diagnosed with endometriosis.  Back then I wanted to have children and was marred to the first husband.  My diagnosis and persistent symptoms – even after the surgery – was to prove another nail in the coffin of our failing relationship.

My second laparoscopy occurred in March 2007.  By this point I was waiting for my decree absolute; I lived in a sweet little flat and my boyfriend stayed with me immediately after the surgery – although I struggled with symptoms and depression I couldn’t have had better support.

My surgeon put me on HRT to help with my PCOS symptoms – which turned out to be a BIG mistake as it fed my endometriosis.  My pain quickly became debilitating.

My third laparoscopy occurred in November 2008.  I was recently remarried and we’d decided not to have children.  My pain was such that I was desperate for a drastic change and I begged for a hysterectomy.  Helios and my surgeon talked me out of it and I was transferred to an endometriosis and pelvic pain specialist.  The surgery was highly successful – I went from a 9 or 10 on the pain-scale to a 1 during my period and nil every other time.

Plonk me in a chair and send me home!!

Since then I’ve coped with my pain by using birth control (which contains some oestrogen because the progesterone-only pills make me aggressive – GRRRRRRR) and then I started tri-cycling my pills: I have a period once every 9-10 weeks.  Since then, upon talking to my colposcopy nurse, I have been trying to extend the time between periods even longer.  I’ve not managed to make it 6 months between periods yet but am looking into it.

I’m also grateful that I didn’t have a hysterectomy.  I was sorely tempted to have it in my deliberations for my upcoming surgery, but this time I have sought treatment before I’ve become frantic about my symptoms and it’s given me time to be objective about what I need.  It’s so much easier to contemplate the choices when you’re compos mentis!

Helios is coming with me to my appointment on Tuesday where I’ll tell the surgeons what decisions I’ve made; we can discuss what the next steps are and when I can expect things to happen.  I’ll be sure to update you as soon as I have more details.

Foxy

Hysterectomy Risks – what I didn’t know…

I cannot go around making decisions without considering all the ramifications.  I have to say that the lack of sufficient information from my surgeons has been shocking.  In 2008 I was in so much pain that I begged for a hysterectomy.  (It’s worth saying that you have to be seriously desperate if you beg for a hysterectomy!)  Even then, I didn’t know all about the side effects – or else I may have begged for something else.  It’s impossible to say what else I would have begged for but I’d like to think I would have asked for something else!

image photo : Water drop Ovaries

What I really wanted in order to help me with my decisions was this list from the HERS Foundation.  What I got was a 20 minute examination and chat about what my options were.  Bearing in mind the examination involved my disrobing and having a trans-vaginal scan, that really didn’t leave enough time for the chat.

She didn’t give me any recommendations but tried to get me to try the Mirena coil again which I strenuously refused after the side effects I experienced when I tried it in 2006.

Once again I find myself angry with doctors!  Not only did they take over 20 years to diagnose me but they never seem to give me enough information.  Oh sure they answer my questions but they don’t offer any further relevant information.  I don’t even know what grade of Endo I have!  It’s at times like these that I’m grateful for the internet: without it I wouldn’t know what questions to ask in the first place.

Foxy – 5th November 2011