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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

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

Second Guessing and Painted into a Corner

Because I know what the doctors found when they opened me up on 2nd March, I’ve looked up the usual treatments for fibroids, I have a rough idea of what the doctors are going to say to me next week at my follow up.  I can’t really help myself – I like to work out all the permutations ahead of time so that I can get the most out of every doctor’s appointment.  I think my choices are:

1)      Cutting off the blood supply to the cysts.  This involves a procedure where they insert a catheter into my leg and navigate around to the womb where the blood supply to certain parts are burnt off.  This is a good option only if the fibroids are in strategic locations.  I may not be a good candidate for this due to my reliance on the birth control pill – so the cysts will probably just come back.

2)      Ultrasound can be used to attack the cysts  but this treatment is only seen as partially effective – which I’m really not interested in.

3)      It’s rarely mentioned on the websites but hormone therapy may be an option.  I will need to have a very low oestrogen level (which I thought I had already thanks to my PCOS).  This may involve the drug-related hysterectomy or it may involve something else and will take several months.

4)      Hysterectomy.  This is the one that I’m dreading and thinking it may be my best option all at once.  I’m tempted to ask them how they think it would work if they removed my womb but left my ovaries and then if I carried on taking my birth control pills (because at the moment I seem to have no active endometriosis).  The plusses for this option are i) I’ll never have a period again and ii) theoretically my hormones won’t change and so I won’t change “in myself” (and by this I mean that I won’t necessarily mentally change).

The down sides of hysterectomy include my concern as to how I will feel about myself after a hysterectomy.  This has nothing to do with me ever potentially having children.  I am more concerned with feeling womanly and my physical relationship with my husband.  I’m probably going to sound rather base here but, frankly, I really like sex with my husband.  If I let them remove my womb, I may never have an orgasm again. Would you want to take that chance if you’re having amazing sex at home?  On the other hand, I’ve been having pain immediately after intimacy for a number of months now and it’s only a matter of time that my body starts to associate intimacy with pain so I have to do something!

Another down side of a hysterectomy is that I’ll need more time off work.  I’ve used up my sick allocation for the year so I’ll be given Statutory Sick Pay for the time that I’m out of the office.  SSP isn’t a lot of money – certainly not enough to live on, but I can save up for the event and hope I can get back to work within just a couple of weeks.  Money is not a critical issue (thanks to a number factors that I won’t go into here) but it’s something that I need to consider.

Having said all that, the hysterectomy may take care of my fibroids but a hysterectomy is not a cure for endometriosis.  OK, at the moment I don’t have active endo lesions but there is a chance that my endo will flare up again and consequently my pain will not diminish after a hysterectomy.  Can you imagine how I’d feel after that? I think I’d demand some anti-depressants, painkillers and Lord-knows-what-else after that!

I suppose what I really want is some indication that one direction is the best thing for me (even if it leaves me with a little, manageable pain).  At the moment I feel like I’m painted into a corner.  No option looks better than the others.  No option leaves me with the guarantee of a  pain-free existence.  It reminds me of the choice of the next leading politician – there is no good choice, just deciding the lesser of all the evils.

If I have my Buddhist hat on, I am reminded that suffering is a mandatory part of living – the choice we have is to endure, or to not endure what pain we have.  If I have my Christian hat on I am reminded in the Lord’s Prayer that it’s “Thy will be done,” not “My will be done”.  So no matter what happens, it  is my lot in life to be trapped in this body.  I have no one to sue for life not living up to the advertisement.  The fact of the matter is that I’m here and this is the hand I’ve been dealt.

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

 

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

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