Pain-free

I’m not in pain anymore.  I haven’t had my usual unbearable pain for about a year after my hysterectomy.  I am no longer dreading the next time I have to subject myself to my monthly agony.  For me the hysterectomy worked brilliantly.  I feel as normal as I did when I was in my 20s, back when the birth control pill was all I needed for pain management.

Immediately after my hysterectomy I was very cautious: I simply wanted to heal and see how I felt.  Healing took time and I would recommend the full six weeks off work – not the four that I was lumbered with.  Those first couple of weeks after my time away were very draining and, although I managed to work, I really was not 100% for work until six weeks after the surgery.  Other things took even longer but going slowly and taking things easy has helped tremendously.

Over the past year I have spent my free time taking photographs and  I’m doing an online photography qualification.  I’ve started an online photography blog.  Helios and I will be to a bigger home so that our family and friends can come to visit from time to time.  Consequently I’ve been looking at interior decoration and have a number of ideas for our new home.  I have helped to organise a charity pub quiz evening at work, which took a lot of effort!  I have visited friends without needing to check and double-check my calendar for fear that I’d be too tired or in too much pain to have fun.  I have started an online resource for my sister who is planning to get married next year.  I have been able to concentrate on family when my father-in-law passed away in January without needing to hide in bed for my pain.  When Helios said that his sinuses couldn’t cope with the smell of bleach, I researched cleaners and now have a recipe for bathroom and surface cleaner using vinegar and bicarb of soda – which doesn’t irritate my love’s nose.  Helios and I went on holiday to Spain for a week in May and had a wonderful relaxing vacation.  I’ve seen movies.  I’ve visited friends.  I’ve sent letters.  I’ve not needed time off work.  I’ve been available for people I care about.  In short, I’ve had a life.  I have checked in.  I am switched on.  I have energy.  I feel like a whirlwind has been unleashed inside me.  I have taken the bit between my teeth and done things without a care to my health issues.

Writing all this makes me feel a fraud – as if my current health condition will cause you jealousy.  I’ve been embarrassed to write this as I know the agony that some of you are still experiencing.  I wish the hysterectomy worked for you.  I wish that you don’t have to have a hysterectomy.  I wish that endometriosis was cured with a tablet or a sonogram scan – just a quick wave of a wand and it’s gone!  Wouldn’t that be nice?

I am still involved with raising awareness for endometriosis and am a member of Endometriosis UK.  Now that I have the energy, I’d better put it to good use for us!

Foxy

My first full week back to work post hysterectomy

I completed my first full week back but only did 32 hours out of the usual 37.5.  Although I am a secretary and not a manual  or skilled labourer, I was still incredibly tired by the end of each day.  Monday was tiring.  I went home at 4:30pm instead of my usual 5pm.  Tuesday was fantastic.  I felt great.  I was nearly bouncing around.  However, in an effort to pace myself I left the office at  4:30pm.   I was tired on Wednesday but went to a friend’s house for dinner.  Although I got home at 9:30  – which under normal circumstances is certainly early enough for me to feel fine the next day especially as I didn’t have a drop of wine!  I had a little sore throat and I started to wonder if I was picking up Helios’s cold.  I took a night nurse and slept like a log but I was tired again on Thursday.  I left the office before lunchtime and had a nap on the sofa.  I went to bed that night at 7:30.  After sleeping like a log, I managed to stay at my office at 3pm on Friday.  I may have done better had I paced myself last week.  I’ve had another good rest this weekend.  I slept overnight and had a nap on Saturday.  I slept well again last night.

Tomorrow I’m back to work again.  I am still fighting off a cold but am eating well and (clearly) sleeping a lot!  I have a car park space just outside the back door of my building and I’m sure my stamina will return quickly!

In other news, because I had a sub-total hysterectomy I can expect a little bleed every 4 weeks.  Well, I had my first period which consisted of a couple of days of a light  bleed requiring only panty-liners.  I had pain but nothing that a paracetamol couldn’t handle.  It may mean that I will finally feel like a normal woman – and all it took was a hysterectomy!

I spoke with my clinical nurse about my stitches which still haven’t fallen off.  She suggested that I go to my GP if I’m concerned about it and they can take them off but I’m enough of a wimp to leave it for a while longer to hope that they fall off of their own account.  Also, regarding scars, I cannot recommend Bio Oil highly enough.  My scars have shrunk  measurably since I started using it – just add a little dab on the scars twice daily is all it needs!

Foxy

Recovery Update

I think I can safely say that I’m feeling a bit better. I walked around the garden a couple of times yesterday. I’m feeling a bit stronger. I am still having a problem with pain on my left hand side. However, I think this is due to the surgery as that is where they had to open me up to get at my uterus. I have cut back on the painkillers that I’ve been taking: managing nicely with just Tylenol. It’s all looking up!

I have spent a lot of time reading in bed. The latest book was a badly written but very informative biography of Marilyn Monroe. If you were not already aware, she also had endometriosis, suffered a number of miscarriages, endured a number of gynaecological surgeries, had problems with depression and took far too many pain medications with champagne. She even wrote into her filming contract that she would not work while she was menstruating!  I was reminded, as if I needed reminding, how much one’s physical health can affect your mental health. I find it sad that I have so much in common with her. However, unlike Marilyn, I seem to have the strength that she never did. Once again, I have to consider myself a lucky individual!

Foxy

Once and For All

I rang the hospital on Monday this week and found that I’m still not at the top of the waiting list.   The waiting list isn’t 16 weeks, it’s 18.

Because I was expecting the surgery to happen in early August, I organised what I thought was  my last period several weeks ago.   I was delighted!  The last of the agony!  More recently, I started to have problems with my symptoms but I thought the surgery would happen sooner rather than later.  Sure enough, I started to bloat out terribly and I was having some spotting.  Despite my taking the birth control pill every day, I was having some spotting.  I was struggling!

So on Monday when I was told that I’d need to wait for another two weeks, I gave up and decided to have another period.  I started my period yesterday.  I didn’t bother going into work because I was up in the night from the pain.  I was having the same problem last night.

On top of my period, I have a nasty head cold that my husband kindly given me.  I’m probably not making a lot of sense.  I’m home again today and am trying not to be in too much pain.  Between struggling to breathe and being unable to stand up properly, I’m feeling a bit like I’m falling apart.

Foxy

Diamond Jubilee

It was the Queen’s Diamond Jubilee this past weekend.  I’ve got a busy few months coming up so I thought it would be a good idea to fit a period in during the four days off work.  These days,  I try not to risk having time off work because of my pain.  I therefore organise my periods during long weekends to save needing to use a sick day.

So, I’ve got everything organised, now all my body had to do was cooperate.  I took the last birth control tablet on the Friday morning and waited.  Saturday came and went without incident.  Sunday came and went without incident.  Monday I was finally feeling a bit like it could happen and that night I started.  So of the four day weekend where I wanted to have my period and get it over with, I didn’t start until 2½ days in.  How can I possibly organise my life around my period when my body doesn’t cooperate??

As always, it’s pretty bad.  I’m taking Mefenamic Acid and a paracetamol/codeine mix during the day.  Strangely, I rarely have problems during the night.  But, having said that, because the pain is so bad during the day, I think I deserve some sort of respite at night!

Well, when I say I don’t have problems at night, that doesn’t include last night.  My pain woke me up before 5:00 this morning.  I got up, ate a hard-boiled egg and knocked back my tablets before crawling back to bed.  I didn’t think I’d manage to drift off again but soon I was dreaming my usual strange dreams.  This week I have a car parking space at work (which is very unusual) so I took the opportunity and got a bit of extra sleep before I rolled out of bed and down the hill into work.  I think I might have called in sick had I not been able to use the car today – that’s how bad I felt this morning.  Although I was taking it easy all day, I did feel uncomfortable.  There were moments where I just had to sit with my head on the desk and try not to cry but then the tablets would kick in again and I’d feel a little better.

I hope this will be my very last period!  I’m on the waiting list for a hysterectomy and should be given a date in August.  If the date for my surgery happens in early to mid August I probably won’t try to squeeze in another period.  However, if it looks more like end of August or September, I’ll probably have to give my body some sort of period break to prevent how bad I felt before Christmas.  Christmas was  the last time I stretched out the time I had between periods: I was trying not to have a sick day and knew I could give my body a period in just a few day’s time.  In the end, I had a lot of spotting and was in constant pain.  I managed to make it to Christmas but had a terrible Christmas holiday because my body was keen to punish me for making it wait so long to have a period.

I felt bad this weekend because of my period but also because I have thrush again.  I thought I’d sorted this out a couple of weeks ago but it’s come back.  So I’m in pain and thoroughly irritated!  Not a good combination!  I don’t know what I hate more – thrush infection or paying for the treatments.  It’s £8.99 per pessary and I cannot take the oral tablets because it turns out I’m allergic to it.  Grrrrr.

 

Organised Period

When I was young and I couldn’t control when my periods were happening, I would miss school from the pain.  I resisted starting birth control because I was afraid that it would make people think I was “easy”.  But then when I started taking birth control I thought “Why didn’t I do this before?”

These days the birth control tablets don’t work as well as they used to.  I have as much pain as I used to when I was young.  The only thing that the birth control does is allow me to  have fewer periods.  Fewer periods = less pain.

These days I organise my periods around my life, which means when I have time off work – the Diamond Jubilee weekend for instance when I am planning to relax – I have a period so that I don’t have to take time off work as sick from my pain.

I’m hoping that the period I have this weekend will be my last.  Oh dear God, I hope it’s my very last!

Foxy

Pain, pain go away and don’t come back another day

I’ve been in pain today.  I’ve tried so hard for years to work out a treatment that eliminates my pain altogether.  I was lucky in my 20s and the birth control pill kept my symptoms at bay.  Oh how I wish I could have truly appreciated those years!  If only I had understood how lucky I was and done more with that time.

But now is not a time to look backward.  I don’t have time to regret what I could have been without my constant companion.  Now is the time to take more painkillers and try to stop crying.

I have tried for so many years to do something that kept my endometriosis pain at bay.  Then when I finally don’t seem to have any active endometriosis lesions, I develop something (truly) just as bad for me: fibroids.  The pain is shooting down my legs.  The pain is making my ovaries burn.  I’m sitting here on the sofa crying, unable to see any reason not to have a hysterectomy.  My Fiona the Fibroid has to go.  I have had enough pain in my life.  I’m ready for drastic action.

OK, I’m still apprehensive about having another surgery (and who can blame me) but I’m tired of being in pain.  I’m tired of living my life in fear of my pain.  I’m tired of organising my life to fit around my periods.  I can’t take anymore.  I need some sort of relief and if it means taking away body parts and throwing them to the dogs – so be it.

I’m sorry.  I’m feeling a bit down.  I’m angry and fed up.  I’m tired.  I shouldn’t be sitting here feeling sorry for myself – I know so many people are dealing with so much more than me – but I’ve had so many years of pain…  I’ve done a quick calculation and I’ve spent more than four years in pain already.  Not constant pain, clearly, but pain that has prevented me from being at my best.  It’s time I did myself that favour and have the hysterectomy.   I absolutely cannot wait any longer to do something!

Foxy

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