Goodbye 2012

Well friends, I cannot let the end of 2012 pass without pondering how it all went.  I have to say, 2012 was a long year.  At the beginning of 2012 I was still rather bloated and in a lot of pain.  I had a laparoscopic surgery in March where I expected endometriosis to be found and cleared.  Unfortunately, a new malady was found and, where possible, cleared.  Fibroids were the cause of my period pain this time.  For treatment I had two choices: I could live with it or I could have a hysterectomy.  It took a couple of weeks to come to a decision but, as soon as I had another period, I knew I had to have a hysterectomy.  I was at wits end and needed to wait three months for relief.

Meanwhile, during my recovery from my first surgery of 2012, I organised to go to the US using the money my father left me.  Emotionally, it was an intense trip.  It’s so hard to do and see and say everything that I want to within just a few days.  Having said that, I had a wonderful time and wouldn’t trade it for anything.  Thanks Dad.

In June we celebrated the Queen’s Diamond Jubilee.  I didn’t go to London but I did enjoy all the festivities from the comfort of my own sofa.  Brits don’t normally make a big deal about patriotism but, on this occasion, it was an astounding success.  It made me proud to call England home.

Shortly after the Jubilee, my sister and her boyfriend came to visit.  What a wonderful time we had!  England, despite periodic rain, has rarely looked so lovely.  I did my best to keep up with her but, I’m sorry to say, she has more energy in her little finger than I have in my entire body.

The London Olympics and Paralympics was an amazing experience.  I saw the Olympic Torch go by in person.  My husband and I went to see the Men’s Road Race event in person – because 1) it was reasonably close, 2) we didn’t need tickets and 3) we could say that we were there.  I absolutely loved the whole atmosphere of the country during the Olympics.

The wait continued for my hysterectomy.  Rarely has a mere 3 months felt more like 6 years!  In some ways, the wait was a good thing as I was able to do a number of things to lessen my recovery time overall.  By the time my date arrived I felt fat, bloated and uncomfortable.  I will never forget the sensation of constantly needing the loo –  my uterus was so full of fibroids it was pushing on my bladder and bowel.  They removed 2 kgs of material in my surgery – so I’m not surprised that I was uncomfortable beforehand!  My time in hospital passed without serious incident.   Afterwards I had a nasty stomach bug – which did nothing to shorten my recovery time!  However, the rest of my recovery time passed without incident.

Coming  back to a normal routine and finally feeling better has proved to be more of a struggle than I’d hoped.  After my dad’s birthday this year I’ve had problems with depression.  I think, after all the struggles I’ve had – not to mention two surgeries in the space of just a few months – my body may just be recovering from the various traumas in its own way.  You know how it goes when you’ve been really stressed for a few months and then, as soon as you get the chance to relax, you come down with a cold?  I think my depression may just  be the same sort of thing.  I’ll feel better overall once I get over my “cold”.

Let’s hope that everyone has a happier, healthier 2013!

Happy New Year

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

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

Hysterectomy Prep

I went along for my follow-up to my follow-up.  Helios came with me.  I asked all my questions.  I got answers.  In particular, I said, in no uncertain terms, that I was afraid that I would lose the ability to have an orgasm if I had everything removed.  The consultant asked me if I have orgasms now.  I laughed and said yes.  She said, “well if you didn’t have them before the operation you won’t have them after – I’m not a miracle worker!  But I’ve never been told that a woman loses her ability to orgasm after a hysterectomy.”

I also mentioned all the other maladies I endure – the endometriosis, the polycystic ovaries, the insulin resistance.  She said I had “The full whammy!” and I said I was indeed a very lucky girl!  Because these other issues won’t go away with the hysterectomy, I mentioned wanting to stay on my birth control pills in order to maintain my current hormone levels.  She said I should try life without them first and concentrate on feeling better.  I reluctantly agreed.

As certain as she was that the hysterectomy would be a great thing for me, I’m still apprehensive but satisfied that a hysterectomy is my best of all my options.  I suppose I’m still apprehensive because I’m still not entirely sure that this change in my body won’t effect how I feel when I’m physical with my husband.  However, I feel I don’t have much choice – the pain I have with my Fiona the Fibroid is too much for me.

The consultant asked Helios how he felt about me having more surgery and he said that he was concerned about me and would support any decision I make.  Only I could decide how much pain I could endure.

I now know what they’ll do to me when I’m under:  they’re opening me up at the belly button again and moving my ovaries to the sides of my abdomen before pulling everything else out my vagina.  They will take the cervix, my uterus, and fallopian tubes.  Normally they don’t bother taking the cervix but I’ve had a number of instances over the past few years where precancerous cells were found on my cervix.  I was told that they could leave the cervix but if it needed to be removed at a later date, it would be a very difficult operation to undergo.  It is better to have it out now and I reluctantly agreed.

As this surgery is more involved than all the others I’ve had, I’ve been told that I need to start Pilates classes again: a strong pelvis is important for a quick recovery.  I’ve also been warned about other post-op issues like constipation and what to eat when in order to keep my strength up.  I was a little concerned that the consultant was a little surprised that the surgeon’s confidence that the hysterectomy could be performed vaginally (Fiona the fibroid is a big girl!) but, because it’s being done this way, my recovery time should be between 3 and 4 weeks.  If I had a more physically demanding job it would be more, and less if less.  Helios has enough holiday to stay with me during my first week.  The waiting list is about 3 months so I’m looking at August for the surgery and recovery.

I’ve told my work recovery will be four weeks, just to be on the safe side.  They have suggested, if I need to ease myself back into a 5 day week, I could build up to it over a period of weeks.  I do feel very lucky to be in such a supportive environment!

I’m still feeling down about it.  I’ve been telling myself that losing my uterus and other accoutrements wouldn’t make me feel less like a woman but I’ve associated physical love with being a woman for so long.  I’m afraid that if I lose my libido or my ability to have an orgasm that I won’t feel like a woman.

I need to focus on the positive: with Fiona gone, I’ll never have another period and, potentially, never have pain again.  It could be that my endometriosis comes back in a few years but I’ll have to cross that bridge when I come to it.

Second Guessing and Painted into a Corner

Because I know what the doctors found when they opened me up on 2^nd 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

Grateful for Endometriosis Awareness Month

As this is the last day of Endometriosis Awareness Month, I wanted to take a few moments to reflect:

1. My surgery on 2nd March found no active Endometriosis.  OK, I have to say that I’m unhappy with a new diagnosis but at least I know what the problem is and am better prepared for another fight.
2. My surgery on 2nd March gave me the perfect excuse to talk about Endometriosis with people with whom I wouldn’t normally talk about my health.  I was wary about mentioning my health at the office but felt I had no choice.  I wanted to turn my negative into a positive and I think I managed that.  I expect some people may treat me differently as a result of my discussions but, as I was displaying symptoms at the office, I felt that people would start to treat me differently negatively if I didn’t.   At least this way I am  in control of the information and they know I’m doing everything I can to feel healthy.
3. Just before my surgery, I had my annual appraisal.  I was told that they were very impressed with my efforts over the last year.  Since then I’ve been told to expect a significant pay rise and a bonus.  I cannot discuss this at work because, due to economic climate, not everyone will be given a pay rise.  After the tough year I’ve had at the office, I feel I deserved it and am delighted that they recognise and value my efforts.
4. Furthermore at work, I’ve been well looked-after.  I merely have to ask and various people have gone out of their way to lift and carry things for me.  I feel supported.  I am in a nurturing environment.  Oh sure, I work hard but after all the places I’ve been, it’s wonderful to feel appreciated.
5. I have the constant and wonderful support of my husband.  He allows me to be who I am without trying to change me.  He supports every decision I make.  He never makes me feel guilty when I’m not feeling 100% and is great at helping when I need it.  I am stronger with him.

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