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Endosisters

If you’d like to join a forum to discuss Endometriosis with others like us, go to:

You’ll find some great people who know how hard it can be.

Foxy

Infection

After a rough weekend full of excess sleeping and stomach soreness, I went to the GP yesterday.  I had managed to work myself up enough emotionally that I was in tears by the time I sat in the chair beside her.  I was asked to hop up onto the table and the GP had a feel of my belly (sorry about the cold hands).  Her touching me was uncomfortable – even afterwards it was as if I could still feel where her hands were stirring up things in my abdomen that are best left alone.  The worst bit of the doctor’s visit was her having a look at my stitches.  OUCH!  Even she was surprised that I am still bruised by my belly button.

Wishing you pain-free days

Foxy

Endometriosis Awareness Month – Raising Awareness

I have found it difficult to discuss my health issues at work.  It’s a tricky one because I’m afraid that health disclosures will effect how I’m perceived in my job.  I’d hate to be discriminated against simply because I have illnesses.  I don’t want to be tarred with the stigma of having chronic illnesses in case it effects how I’m perceived and treated.  I cannot afford to lose my job.  In order to avoid this I generally don’t discuss my health issues with people at work.

However, I have been at this office since January 2010 and, I believe, have proved that I’m a reliable and determined member of staff.  I have completed a number of projects in good time and have enjoyed some new responsibilities thrown at me.

So when I arrived at work one morning in November I told my line manager and partner that I would need surgery, I was determined that I would get the “endometriosis” word out.  My friends from the office haven’t asked me much about the condition yet but I have made it perfectly clear that I’m available for questions.  I expect there will be more questions upon my return to work.  Well, I hope there will be.

Foxy

March is Endometriosis Awareness Month

Please don’t forget that I keep having these fantastic laparoscopy surgeries because I have endometriosis.  I’ve said it before and I’ll say it again, endometriosis is a chronic illness.  There is no cure.  The surgeries I have and tablets I take are mere pain management tools.  Even if I have a hysterectomy, it will be a mere pain management technique (and a drastic one that I cannot quite stomach yet)!

Foxy

Laparoscopy Survival Guide

Thanks to my Endometriosis and other maladies, I have had recently had my fourth laparoscopy.  Here are some tips that I’ve learned (some the hard way) to make the experience easier:

Before the big day

  1. Pack a bag.  The paperwork may say that the hospital will try and get you out of the hospital the same day but if you react to the cocktail of medications you’ll be given, you may wind up staying in hospital overnight.  Your bag should include
    • reading material and/or an ipod to fill long hours;
    • all the medications you’re currently taking – all tablets, creams, ointments, vitamins, herbal remedies, etc.  It could be that you need exactly none of these but it’s a good idea to have them to hand if you need to produce them or indeed, if you need them;
    • if you wear them, a pair of glasses – leave your contact lenses at home;
    • an extra pair or two of panties in case your stay is longer than you anticipate;
    • your preferred brand of feminine hygiene products, if you’re having work done inside the womb;
    • pyjamas or other wide-waist trousers.  These are essential for your comfort as you leave the hospital;
    • slip-on shoes are also essential because bending towards your toes is very uncomfortable after a laparoscopy; and
    • your mobile phone.  Communicating with your family is far quicker if you do it directly.  I found having it a comfort when I had to wait for a few hours longer than I expected.

On the day

  1. Be brave.  Even during the wait for my fourth lap I found myself frightened and in tears.  I had to keep reminding myself of my symptoms in order to keep me in the building.  Believe me, because the only way to diagnose certain illnesses (including endometriosis) is via surgery, it’s worth the candle.
  1. Local.  It could be that you’ll be given a local.  I found this to be scary:  I’m not the sort of person who goes exploring my rectum so the prospect of a nurse inserting anything there was not pleasant.  However, there was no reason for me to panic.  It’s an unpleasant experience but not painful.  If you’re really lucky, they’ll do this to you while you’re asleep.
  1. Recovery.  After my first surgery I arrived in the recovery area and tried to climb off the trolley and go home.  Not the done thing!  Since then I know that I’m to wait on the wheelie-bed and wait.  In Recovery the nurses make sure you come around well.  This is the place where you’ll quickly get pain medication if needed.  After my most recent surgery, I felt fine upon waking but then started to feel the pain.  I made sure to say something and was given relief fast.
  1. Relax.  Eventually you’ll be wheeled back to your room.  You may be tired and disorientated but you’re in safe hands.  Once I was on oxygen and felt rather nauseated.  After my fourth laparoscopy I was alert and ravenously hungry.
  1. Feeling sick?  If you find that you’re feeling nauseated, please be aware that the anti-sickness medication that the nurses can give you must be injected into a muscle.  It hurts.  The sight of me crying afterwards made my husband so unhappy that he forbade that nurse contact with me.  My point is that you may want to be sure you really need it before you ask for the injection.
  1. Diagnosis. I remember after my first surgery, the surgeon came around and told me things that had happened during the surgery.  Unfortunately, I wasn’t really awake and had to have another full debrief at my follow-up.  At the time I wished I’d had someone with me.  Depending on the hospital, your other half may be able to stay with you as long as you like.  Believe me, it’s handy to have someone else there who can ask questions if you’re not awake enough to do so for yourself.
  1. Shoulder pain.  I’ve never had a problem with this but am told it’s very common.  When you’re under, you’re blown up like a balloon.  The air can try to escape via your shoulders.  Once it’s there, it hurts.  Part of the reason I’ve never had a problem with this is because I move around a lot.  Moving around can be uncomfortable but it’s worth doing.

At home

  1. Journey.  On the long drive home there may be bumps that irritate your incision points.  The best thing I’ve found is to hold in your stomach muscles just a little.  You want to hold any jiggle that bumps may cause your tummy but not hold it in so much that it hurts.
  1. 24 hours.  You may have been told that someone will need to be with you for 24 hours after the operation.  Make sure you do.  When you get home you won’t want to cook.  You won’t want to do the dishes.  You ought not lift any heavy object.  Don’t be a martyr.  Organise help for yourself and be grateful you have fantastic friends/family etc.
  1. Wind.  During the operation you’ll be blown up like a balloon.  Ultimately the air needs to come out and you’ll find yourself producing wind as if it’s coming out of a balloon.  This can be disconcerting but is normal.
  1. Constipation.  After all that nil-by-mouth business and pain medication you may find yourself in even more pain thanks to your bowel.  After my first operation, I nearly passed out from the pain during my first movement.  I’ve never experienced anything else like it.  The last thing you want after everything you’ve been through is to sit on a toilet for an hour crying and being unable to produce anything but granite.  If you’re doing this with holes in your stomach – it’s agony.  Believe me when I say that you must take a laxative.  I take a gentle laxative that’s guaranteed to work overnight.  In this situation, I need a couple of night’s worth to get things moving smoothly again.

I hope these tips help you.

Take care and be healthy

Foxy

My fourth laparoscopy

I was the fourth on the list on Friday.  The wait was pretty unbearable so when the anaesthesiologist finally arrived and said I was next, I asked if there was a way that I could get away from the place and grab a steak!  I was finally taken to theatre after 2pm – or 15 hours of nil by mouth.  In recovery I had to ask for a bit of pain medication but I felt alert.  I was delighted to get back to my room where I had lots of water to sip and a hot meal of mystery-meal lasagne.  The food was OK but I didn’t finish it.
I felt so strong after my surgery that after about 3 hours I asked the nurse if I could go home. After fulfilling my patient obligations (evacuating my bladder as well as finishing some paperwork) Helios took me home at about 8:00 and I went straight to bed.  I was tired and sore but not bad, all things considered.  Helios has been patient and loving when I needed to wake him in the night.  I let him lead me to the loo and then back to bed.  He has been happy to refresh my drinks and made me breakfast this morning.  Now he’s off to the shops because he wants to prepare something special for me for tonight’s tea.  What a guy!
Technically speaking, the doctors swabbed my cervix to test for a certain virus in order to ascertain if my abnormal smears are caused by this virus, I was also given a hystoscopy and laparoscopy.  Although the surgery was a complete success, I was given a surprise.  I had no endometriosis cysts to remove.  The symptoms that I have been experiencing are due to fibroids – not endometriosis.  In one way I was delighted because it means that the pain management that I’ve put in place has indeed been successful in managing my endometriosis.  However, something new means that I will need to work hard to manage those symptoms which may ultimately lead to a further surgery.  For now, I have a follow-up appointment that will be scheduled in about 4 weeks’ time.  At that point I will discuss my options and obviously keep you informed.
Needless to say I’m really disappointed and the shock of needing to fight something new has left me in tears.  I’m glad I am not in the office for a bit – it will give me a chance to get accustomed to the idea and put a bright face on my situation.
Foxy

Endometriosis Awareness – Surgery Prep

In order to keep the spirit of fun and Endometriosis Awareness alive, I sent the below email to my office:

To keep you in the picture, I will be having surgery at the hospital on 2nd March and will be off work recovering the following fortnight.  It’s not a bosom-enhancement, lip-replacement, ear-beautification nor a tummy-tuck.  My malady is a bit of a bother but not life-threatening.

I am happy to discuss the complexities of my health issues but wanted to spare those with a weaker constitution.  (!)

Once I am back in the office I may be unable to lift heavy objects for a number of weeks/months and I would therefore be grateful for your assistance from time to time.

Thanks

Now I’m sure you can imagine the comments I got – the strangest one was asking me about the tattoo was that I was getting removed.  (!)  As my mother reads this, no Mom. I don’t have a tattoo.  I certainly wouldn’t have a tattoo of the Liverpool Football Club motto!  However, I do have a number of friendly people in the office who are good at making light of a not-so-great situation.

How is this email good for Endometriosis Awareness?  My being coy has allowed those who want to talk about the illness to speak to me.  I have been frank and open with a number of people.  Hopefully I’ve made a difference.

In order to get everyone up to speed, I also gave handover notes to my line manager.   In it I said this:

I don’t know if the company sends flowers at a time like this so I may be talking out of turn here.  However, I’d rather not receive flowers.  If people are desperate to wish me well, please send a small charitable contribution to Endometriosis UK. 

It was just as well that I got that pre-emptive strike in because my line manager said that I’d spoiled her surprise.  The gesture was a lovely one, and so like her, but if any money was to be donated I’d much prefer it to go to charity.  At this time in my life, and with everything I’ve endured, I certainly don’t want flowers when I can ask for a contribution to a charity that means so much to me.  By asking for contributions to a charity instead of flowers, again, I’m hoping that the people where I work get the idea that Endo is awful and there are charities out there to support us.

For the record, I would like to say that I don’t recall any other organisation where I’ve worked sending me flowers when I went for surgeries.  I expect it must have happened but I certainly don’t remember it.  I feel really well looked after here and I suppose, consequently, I want the world to feel a bit better off too.

Just in time for Endometriosis Awareness Month: Surgery

I really don’t know how I feel about the surgery.  At first I was delighted: after waiting for four months it’s about time!  Flop me on the table and cut me open!  On the other hand, it’s another surgery.  There are inherent risks involved with surgery.  I’m also a little more wary because I’m having it done on the NHS: no private room so probably very little sleep, no specialist meal the next morning which I’m tempted to avoid by asking if I can go home on the same day.  I’d probably be better off that night with Helios looking after me than the five nurses looking after a floor full of patients.  He won’t be able to administer medications but he’d make sure I was comfortable.

I can’t help but wonder what’s been going on in there since November 2008.  My endometriosis may have taken root and flowered in the time that I’ve left it – perhaps it’s like The Secret Garden in there?  As romantic as that sounds – take it all out and tarmac over the lawn please!!  LOL

In other news I had a chat with one of the partners at work.  He said that I was not to come back to the office until I’d been cleared by a doctor to do so.  He’s obviously heard from my line-manager that I was hoping to come back to the office in the shortest amount of time possible.  I think I must have a bit of  PMT at the moment because I nearly cried when he said that my health should be my highest priority.  I feel supported by my work.  It’s a first.  No wonder I nearly cried!

Foxy

Goodbye Dorian Thomson

I didn’t know you but you and I have something in common: pain.  You committed suicide after unrelenting dental pain from EDS.  Six unending years.  I’m sorry for your pain but, and I may be assuming you and I were remotely alike here, I know all about chronic pain.  I myself manage endometriosis pain.  My pain has been so bad that I, at times, wished for death.  I know, psychologically, how you must have felt.  I read your story and cried.

I wouldn’t wish EDS on anyone.   I hope you have found peace.

Foxy

A Date with Destiny

I have finally been given a date for my fourth laparoscopy: 2nd March.  I’m a little apprehensive but happy that I can expect an end to my waiting soon.  It’s been nearly four months, one period and more fatigue than I care to admit to.  Exhaustion has been my constant companion these past few months.

On the bright side, I have a decent job, a great family and a wonderful husband.  You could say I’m the luckiest woman alive – if you ignore my health issues of course!