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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

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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

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

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

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

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