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

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

Will power

Apparently everything is healing nicely.  We’ve not had actual post op penetration but, after a bit of fun, what little discomfort I had when fooling around is now gone.  I’m finally in the position to contemplate “the full Monty”.  You’d think that I would be more mentally wary about the idea of any sort of penetration but I’m married to someone very gentle.  The thought of me being in pain is a turn-off for him.  Although I am not having a problem with desire, and there are times when I simply want to do all the things that I love doing with Helios without waiting a second longer, I’m also in the mood to be cautious.  Given Helios’ gentle nature, I am concerned that he will feel terrible if I experience any pain or discomfort.  I worry that he may never want to be with me again if I rush us in the bedroom.   I know if I pace myself with him everything will go smoothly but I hate waiting.  I may be patient in other areas of my life but not when it concerns Helios.  It’s a good thing he has more will power than I do!

Good days and bad

I don’t know if it’s a bug or if I’ve eaten something but my bowel isn’t happy.  It started churning last night and hasn’t really let up.  I struggled to get to sleep last night and had vivid dreams.  I dreamt I was in London, shopping for Helios’s birthday and on my way home.  Although I knew I was in London and there were Black Cabs everywhere, the streets and buildings looked American.  My brain successfully merged both homes into one comfortable place.  I woke up when I was trying to get home from London; I was trying to decide how best to get to Waterloo station.  I was looking for an Underground station but kept seeing a lot of  Black Cabs.

Unfortunately I am uncomfortable today.  Hopefully it will pass soon!

Foxy

Fooling Around

The strangest side-effect I’ve experienced after my hysterectomy regards my libido.  I’ve been horny.  Who would have thought that losing an organ wouldn’t have effected me so strongly but there we are.  I’m chasing Helios around the flat the way I used to when he and I first got together.

I finally relented and we fooled around last night.  Now, I will say I’m not stupid: no actual penetration occurred.  Despite this, we enjoyed ourselves.  Afterwards, I found that I was a little sore.  My cervix in particular felt just a little sharp.  It’s not agony by any stretch of the imagination, but I have had some discolouration of my discharge today.  Luckily, I’m not in any discomfort.

Foxy

National Health Service

Hi Sandy
I wanted to reply to your comment with a comment but I found myself writing an essay.  Please forgive me if the below looks like a rant!

Although I can understand that a lot of Americans think I’m crazy to say that the national health service is a good thing, please see it from my view. Since 2005 I have had five laparoscopic surgeries and a multitude of trips to various doctors for problems relating to my existing conditions and otherwise. I truly believe that, had I remained living in the US I would not have received such good health care treatment because 1) I would be constantly worried about the cost of visiting the doctor and therefore wouldn’t go as often as I ought; 2) I would constantly be worried about the cost of prescriptions and would have to choose which medicines to take – not on a basis of need but on a basis of what I can afford; 3) I believe achieving a diagnosis in the US is a bad thing because it allows insurance companies an excuse to reject health care cover; 4) from speaking with American friends and family, I have to note that the extra stress involved in forcing insurance companies to pay for the procedures that they have already authorized is intolerable and can easily aggravate the health of patients; and 5) I feel it is worth mentioning that I get world-class care from my local hospital.  I am recovering surprisingly quickly after my operation!

Now, I’m not saying that National Health in the UK is perfect: 1) we have to wait our turn for elective procedures (as my hysterectomy was not treatment for a life-threatening condition, it is an elective operation); 2) there are problems with having adequate numbers of nurses and doctors; and 3) there are other bureaucratic problems that have emerged – money that might be better spent doing x and y rather than wasting money on a and b.

As you can see, I obviously feel the pros outweigh the cons.  I sincerely believe that, had I remained living in the US, I wouldn’t have such a successful working life because I would be constantly battling my body and insurance companies.  I would have struggled to hold a job due to my illnesses and pain.  I certainly wouldn’t have been able to afford the five surgeries I needed over the recent years!

I believe that, as a productive member of society, I have an obligation to others and part of that obligation means contributing to the National Health Service.  I think everyone should have the same opportunity for  a healthy life!

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

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.