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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

Raindrops keep falling on my head

When I was very young and my parents were still married, I had an imaginary friend called “Cher” and I was good at singing and dancing to the B J Thomas song.  My voice does not lend itself to a more feminine tune – my ex husband used to say that my singing would make the foundations of the house crumble!  He always was a charmer.  (!)

In the midst of my recent period and very painful time, I kept thinking about returning to the sunlight of pain-free days.  I feel plagued by occasional but torrential bouts of pain.  Although I am still in pain today, I am coping by taking my painkillers and dreaming of the days when I may have just enough pain to be in discomfort and unable to complain.

Just as with the rain, I’m never going to stop the pain by complaining.  It would be nice to talk with the sun and tell him he’d been sleeping on the job but all I can do is not let the pain defeat me.

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

Happy Christmas!

This entry will be a bit on the graphic side – for which I apologise in advance.  The first day of my last period was 27th August.  I have managed to keep the menses at bay by taking my birth control religiously.  Well, I say I have kept the menses at bay but I have had a bit of spotting and bleeding for the past couple of weeks – the longer I’ve waited to have my period the more bleeding I’ve had.  Each day I’ve had a bit of bleeding I also had a lot of pain.  Between my bruising and my body trying to have a period, I have struggled with pain!

I finally relented and stopped taking my birth control on 23rd and I am sorry to say that the pain has been unbearable.  I am taking the mefenamic acid and paracetamol for the pain.  I’m taking Tranexamic Acid in order to keep from “flooding” as instructed by my surgeon.  She seemed concerned that I would exhibit that symptom.  I don’t expect she’ll like my bleeding between periods either…  I don’t have a date in the diary for my upcoming surgery just yet but am hoping that it will be sooner rather than later.

In the meantime Helios and I are spending our usual Christmas together.  We don’t visit his family because his parents now live in a flat and don’t have the room to keep us.  So on top of a 4 hour drive, Helios and I would have to stay in a hotel – an expense that we can hardly justify.  We usually organise to see them in the New Year.  If we’re lucky, we’ll get to see Apollo too!

I am delighted to say we’ve had a quiet and relaxing Christmas.  I have had some extra time in bed due to pain but Helios has been very good about giving me everything I need.  I had plenty of help in the kitchen and he’s made a couple of hot water bottles to help with the pain.  I hope Helios understands that even though I haven’t been wearing my Christmas smile today, I am delighted that he and I are spending this time together.

Wishing you peace and pain-free days,

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

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

Choices, choices

I’m going to take the time to thrash out what I feel are the pros and cons of the treatments I’ve been offered by the consultant I saw on Tuesday.  As I find thinking on the page just as helpful as talking to Helios and my mom, I hope you don’t mind my “thinking out loud”.

  1. Drug Treatment (Lupron)

Pros

  • Temporary effect
  • Won’t have a period at all while on it

Cons

  • Will take time to take effect (which is a bad thing if I am trying to cope at a full-time job)
  • May not work
  • May not have the same effect as a surgical hysterectomy
  • Would need to take HRT (progesterone) which has been known to make me crazy.
  1. Laparoscopy to treat endo

Pros

  • I’ve had this before so know what to expect
  • If done well, can significantly reduce pain for a period of 2-3 years for me (but not guaranteed!)

Cons

  • It’s still surgery and has risks
  • Will still need to take birth control tablets
  • Will still get periods
  • I know for certain that pain will return in due course
  1. Hysterectomy (but retaining ovaries)

Pros

  • Never have a period again!!!!
  • No need for birth control

Cons

  • Endo will certainly return and I will need to ascertain what new symptoms to anticipate
  • Need to find out if I will need hormone treatment for endo and/or PCOS post surgery
  • Irreversible
  • Need to find out how to ascertain when endo has spread enough that I need to see a doctor again
  • Will my hormone levels still rise and fall every month?
  • Will it affect my physical relationship with my husband?
  • Not sure if it will positively affect my pain levels
  • Don’t forget all surgery has risks
  1. Hysterectomy (with ovary removal

Pros

  • Never have a period again!!!!!
  • No need for birth control

Cons

  • With the added element of ovary removal – hormone levels will be a complete unknown and therefore impossible to anticipate.
  • Will need to take HRT post-surgery
  • I will still have endometriosis – so need to ascertain what new symptoms to anticipate
  • Irreversible
  • Will it affect my physical relationship with my husband?
  • Unsure if it will positively affect my pain levels
  • Osteoporosis runs in my family so, at the very least, I would want a strategy to combat this.

My current thinking is to reject the chemically induced hysterectomy – but not outright.  If I have surgery and then try the lupron, I may find that an appealing option because, if the lupron is difficult for me, I would know that my pain would not be as bad when I came off it.  I don’t know if they’ll let me try it in that order but that’s what I’d like to do.

As appealing as the lap is, I am concerned that my doctor may be right in her thought (I won’t have a diagnosis until the womb is taken!) that I may have adenomyosis.  The symptom that tipped her off was post-intercourse back pain.  She examined me with a trans-vaginal ultrasound (or I call it sonogram on a stick!) and found that my uterus seemed “painful”, that she expected it to be pliable but it seemed very solid and had no movement.  She asked if I had a history of fibroids and I had the rare opportunity to say “no, not that one doc!”  If she’s right then the lap won’t go far enough in removing my pain-giving beasties…

Since my examination, when Helios and I were intimate, I experienced discomfort on climax.  It wasn’t horrible and, because I was enjoying myself, I called it “odd” at the time because I didn’t want Helios to stop.  I am so grateful that Helios hates me in pain.  Pain is not sexy.  However, the incident served to cement the thought in my mind that if I don’t do something to get my uterus out, that I may be having more discomfort during intimacy.   This could lead to less frequent intimacy which, over a significant time period, may lead to a change in our relationship.  I think I’ve said it before but it bears repeating – now that I’m in a healthy and happy relationship, I want to do everything in my power to ensure that it remains so.

My next choice therefore is the hysterectomy but retaining my ovaries.  The significant plusses to this are 1) I will never have a period again, 2) with ovary retention I can ask to try the chemically-induced hysterectomy post-surgery in order to suppress the return of my endometriosis and 3) if I do have adenomyosis, the discomfort I experience on intimacy will completely disappear.  However, if it’s not adenomyosis, then I may have another new pain-giving beastie and I’ll be a medical miracle worthy of study!!

As with all my choices, I assume I will need further surgery for endometriosis in due course – while that will be the case for all my choices, I am slightly in the dark as to what form of pain I will encounter next if I have my womb removed.  Will it be worse?  Will endometriosis spread throughout my pelvis?  Perhaps it will want to travel further afield, get a train ticket and go around the UK?

At the moment I’m completely discounting a full hysterectomy with ovary removal.  I feel this option is simply a bridge too far.  I feel that I need to retain my ovaries (as PCOS-ridden as they are) in order for me to feel a bit more womanly.

With all the usual frustration of my conditions, why oh why can’t I just have an easy choice?  Just for once wouldn’t it be nice to be given a tablet and told “You’re cured!  Now off you go, I have sick people to attend to!”  Nope.  We’re stuck in the queue of sick people, tapping our fingers against our new list of ever-growing symptoms.  I wish I had a crystal ball to see the different ramifications of each option so I could choose the option I can live with.

Isn’t it ridiculous!  I’m sitting here crying because my options are so crap that I have to choose one that is the least worst!  When else does anyone do this??  Oh yeah.  When we choose our politicians!  That’s the only time when healthy people can begin to contemplate how CRAP my life has become thanks to endometriosis!

Wishing you a brighter future

Foxy