Bladder Nightmares!

Tonight I really thought I was going into urinary retention, also known as not being able to empty my bladder.

I've got ongoing bladder issues at the moment.  It's a long story, but I've had issues on and off all of last year, and a bit the year before as well.  It started out as just a couple of days of frequency and urgency issues every couple of weeks, which I put down to Endo and having had 3 surgeries in 2014.  Everything in your pelvic cavity is so close together, that it didn't surprise me that I may have developed a bit of an iffy bladder as an unfortunate side effect of all that surgery.

In October 2015, things began to noticeably worsen and by December I was experiencing bladder problems for 2 to 3 days out of every week.  My Gynae was concerned that the ongoing fatigue and bladder issues I was experiencing may be signs of pre-diabetes when I went back to see her, so she set me up testing my blood glucose levels for 3 months until my next appointment.

Enter the New Year and the beginning of 2016, and my bladder has continued to deteriorate.  Now, every single day since January 1st has involved full time bladder problems and pain, and not to go into too much detail, but I'm using the bathroom 15 to 20 times a day now!  Let's just say that I'm thinking about redecorating my bathroom, since I seem to visit it so often these days!

Today had been yet another very busy day for my bladder, but I noticed a change tonight, whereby when I tried to empty my bladder (which felt full), not much at all was coming out.  This might not seem very scary to the average person, but to me it started to ring alarm bells considering my 'normal' volumes at the moment are much higher than that. 

Didn't think too much of it until it had been happening for a few hours, and I was lying in bed when it hit me.  That this was exactly what happened when I went into urinary retention for the first time back in early 2014.  That was a seriously scary experience, even more so than Endo pain, because having absolutely no control over such a basic and vital bodily function does really make you panic.

So for the last 30 minutes, I've been pacing the hallway in the dark with my earbuds in, trying not to freak out and hoping that gravity would help sort my bladder out!

Luckily just now, my bladder has decided to behave and normal(ish) service has resumed for now.  Phew!

Leaving my bladder in such an over-active state does concern me, especially because my next Gynae appointment isn't for another 5 weeks.  I've tried to bring it forward, but it's just not possible this time around (the joys of being in the public health system).

I would hate to think that I may be developing permanent, irreversible damage to my bladder while I wait for my appointment, but I'm crossing my fingers and toes that this isn't the case!

Bladder, just hold on and don't play any more tricks on me please!  Don't think my nerves can stand it!

A Letter to My Gynaecologist

Dear Dr V,

You'll probably never read this, and I don't think I'd ever get up the courage to send it to you anyway!  But it's 2 years to the day that I first met you,  and I've been reflecting on my Endo journey, so I wanted to write a little something to you, because you've been such an important part of my life over the past 2 years.

I guess you could call it an ode or tribute to you, but this is my blog and I think both those words sound ridiculous, so I think I'll just call it a letter of thanks and leave it at that!

The first day I met you was a Friday in January 2014, the day after my diagnostic laparoscopy.  The Registrar who was looking after me saw me gingerly walking down the hallway in my hospital gown, and brought me over to you to introduce us, because I was being referred to your list for my upcoming surgery to remove the Endo lesions seen at surgery the previous day.  

There I was in my hospital gown, and then you turned around from the group of doctors you were with and there was this lovely friendly but slightly serious face looking back at me.  You said "Hello, hello, nice to meet you" and then you were off down the hallway to see your next patient.  I remember that day you were wearing a navy blue skirt suit, which I liked to refer to as your 'power suit', and honestly I was a bit intimidated by you!  But that was 2 years ago, and basically the whole thought of having a Gynaecological problem was pretty scary!

That day I was pretty freaked out with lots of thoughts going round in my mind, including how much pain I was in, the fact that I had Endo and needed more surgery.  It was all a big shock to my system, and which Gynaecologist I would have looking after me hadn't really crossed my mind yet! 

As 2014 wore on and the admissions to and nights in hospital piled up, I felt like I got to know you a little more.  You would always come to see me each day when you could, and were happy to take a moment to answer any questions I had.  

Even though you probably always had other places you needed to be, you always made time to come to my cubicle in the mornings and explain what tests were being done or what was happening that day.  Sometimes you would even do my blood tests or put an IV line in while you were there, and you were the best at doing that!! 

Some days you would even sneak into my cubicle in the afternoon before you left for the day.  You'd pop your head around my curtain, drop your bag and perch on the windowsill in the late afternoon sunshine, to have a chat with my parents and I and update us on any results or plans for the following day. 

If I'd had a bad night and was in a lot of pain, seeing your shoes appear underneath my cubicle curtain or hearing your voice float down the Ward hallway in the mornings was all I needed to know that everything was going to be all right because you were here now.  

One time I was in hospital yet again, one of the House Officers caught me in the patient kitchen and thought I was visiting someone. She was dismayed to hear I was back on the Ward again, but shared something about you with me that definitely lifted my spirits! She said that you got all the tricky cases, and that if anyone could get me sorted out, it was you. Those words gave me even more confidence and faith in you, and helped me carry on. 

When I graduated from being an Inpatient to being an Outpatient and seeing you in Clinic as opposed to on the Ward, you were still very supportive of me, even if you were running really late some days!  But I like to think that you running late is a sign that you take excellent care of everyone else just like you do of me. 

When I try to thank you for your care sometimes, you tell me that you're just doing your job, but to me it's so much more than that. Even though I'm sure you have lots of other patients to care for while you're looking after me, you make me feel like I'm really important when I come to see you, which I'm sure is hard when you're so flat out busy all the time. 

Sure, we've had our disagreements over the past 2 years, and you've had your bossy moments when you've told me to stop Googling my symptoms (I have, by the way!), or told me I shouldn't worry so much or take things so seriously.  But these moments pass, and after 2 years we're still together, so that must mean we make a good team, right? 

And then there have been the emotional moments we've shared... 

The laughter and smiles when sharing a joke or funny story at the end of an appointment.  

The tears have flowed as well since I've known you, because sometimes the pain, symptoms or just general uncertainty on my part get too much to bear.  I remember one time I started to cry in your office and just couldn't stop, so you got up out of your chair, took me in your arms and just held me tightly, stroked my hair and told me it was ok and helped me to calm down. I don't think I could have cried that day with any other Doctor present, but there's something about you that just makes me feel safe. 

Sometimes I think my complex issues have probably given you a few grey hairs, and I hope that having me as a patient hasn't caused you too much stress!  Hopefully my kind nature and winning personality make up for that! 

I can't begin to tell you how much I appreciate everything you've done for me in these past 2 years. Maybe I'm still not in the best of health yet, but the fact that you've stuck by me and haven't given up on me means so much.  Each time I come to see you, you've been thinking about me and you always have some new idea, test or treatment for me to try, and that's all I can hope for and more.  

Thank you Dr V, from the bottom of my heart.  I'm so glad I ended up with you!

P.S.  I saw this quote online, and somehow it made me think of you, because you have definitely helped make me feel alive and positive, so that I can continue to carry on during my Endo journey...

N.B.  Names have been changed to protect the identity of those mentioned in this post.

Honouring the Nurses

Today is International Nurses Day.  What better way to celebrate what Nurses do, than to honour some of the ones I had the pleasure of getting to know during my multiple hospital stays.  I've been writing this post on and off for a while, so here it is today in honour of all Nurses.

I have met many nurses during my hospital stays, too many to count.  Some just come and go, but many others have stayed lodged in my memory because of the little things they did and said that made all the difference to my stays.  

So, below I would like to honour those I remember, because I feel it's important to acknowledge them.  Please note that names have been changed in some cases to protect their privacy.

Anneke - for being the quiet nurse that was softly spoken and gentle with me, particularly on one day when I was emotionally fragile.

Belinda - for being my hospital mother during my first stay and for accompanying me to Pre Op for my first surgery.  Having you there helped me to be a little less freaked out.

Bindu - for taking such good care of me while I waited to get admitted to the Ward.  Also for being there on the day when I had that procedure done.  I was really glad it was you.

Bridie - for always having a smile on your face and chatting about life which made things a bit more normal.  Oh, and for telling me that when you were a nursing student, your friend made you try all the gross things that you now give to patients.  That made me feel a lot better while having to drink that powdered stuff!  Also for introducing me to those Remove patches that take the sticky adhesive off your skin - I loved them!

Carol - for doing all the little things on the Ward and for finding me flannels when they all seemed to have disappeared from the linen cupboard.  And that day you made my bed when I was out walking the hallway with my parents and I got back to find Benjamin, my Endo bear, pride of place on top of my pillows - it was a small thing, but it made my day!

Charlotte - my 3am angel.  It was always nicer to be woken up in the middle of the night when you were on duty.  We quite often had a whispered conversation while you did my obs.

Chelsea - that first night I arrived on the Ward, I was pretty scared.  Thanks for just being there and making sure I was ok.

Glenys - for always being there in Pre Op to do my checklist when I came in through ORDA.  And for the cheeky wink we shared when they wanted to do yet another pregnancy test on me, even though you and I both knew what the answer would be :-)

Grace - having someone younger to talk to about normal things like TV and movies was lovely.  The number of things we could talk about in the time it took to do my obs was pretty impressive!  The best days were when you and Toni, my "dream team", were both on afternoon shift.  That night when I was the only one left in my room and you came in and we just had fun and laughed and chatted about random stuff was probably the best night I had!  Also, for all the heat packs you made me - bliss!

Gracy - for defending me when someone complained about all of the food I had in the fridge.  No one could argue when you told them I had been Nil by Mouth for 48 hours - no wonder my yoghurt stash was so big!

Jo - for always being smiley and chatting about your student ward placements.  And for all of the heat packs you made me, by the time I was discharged you were an expert and they were always just the right amount of heat for me!

Kanta - for taking care of me with the other nurses the night I developed tachycardia.  I was so scared, but having you there and trusting that you would take care of me definitely helped.

Mini - for trying me on all those different anti nausea meds until we found one that helped a bit.  You were so lovely and caring. 

Namaste - for accompanying me to Pre Op for the procedure I had done under GA.  Again, having a familiar face there really helped me to stay calm.

Pamela - for writing in my notes (that I got from Clinical Records later) that I was watching a movie with my boyfriend that weekend in hospital.  That was actually my brother, although we all got a giggle out of it!

Paula - for being the cool nurse who wore skinny jeans to work!  Also for picking me up in the hallway when I collapsed against the Reception desk and almost passed out - much appreciated.

 Rachael - What can I say - you were amazing!  Really caring and fun to chat to about all sorts of things.  You also made those blood clotting injections hurt less, which was fab from my point of view.

Saras - I know you were only filling in for someone who was off work, but you are such a beautiful person and always helped me out with whatever I needed, even if I wasn't quite sure yet what it was.  The lovely conversations Mum and I had with you were nice and reminded me there was still a world out there, even if I was currently stuck in a hospital bed.

Sepi - for keeping everywhere so clean and tidy.  Thank you so much because it's the things that keep the hospital running that tend to go unnoticed, and you do a great job.

Siobhan - for making me comfy at 3am after my first surgery by rolling me onto my side and barricading me in with pillows.  Those 4 hours were the best sleep I had all night thanks to you.  Also for the conversation we had about books, as Mum was reading me The Book Thief at the time.

Toni - How do I describe you Toni? There are no words to tell you how awesome you are, but here are a couple of highlights.  Your cheeky grin and ready smile when you put your head around my cubicle curtain.  For being brave enough to convince my rubbish veins to accept an IV line.  That night when we were both encouraging my veins because of that huge MRI Contrast line you had to put in.  Talking about life, the outside world and both of our families.  That time when I was standing in the middle of the Ward about to pass out from the pain and you came in and knew what I needed without me having to say anything, then guiding me back to bed.  All the cold flannels and ice cubes in my water jug, and the Peppermint Tea.  Who could ever forget my family all trying to cut their fingers off in the same week!  We had such a laugh over that!!  And the hug you gave me on the day I finally left for good - thank you :-)

Vivi - That night when you came in and saw the terror on my face when I developed Tachycardia.  Thank you for being calm and reassuring me that everything would be ok.

Zeena - for leaving me to sleep and not waking me to have my obs done that night when I was having a good deep sleep for a change.  Sleeping through til 5am was a real achievement for me, and I have you to thank for it.

To the 2 Level 9 Theatre nurses who took such good care of me.  I have forgotten your names, but I will never forget your faces.

To anyone whose name I forgot, and I'm sure there are a few.  Just thank you for all that you do.

Oh, and for the invitation to the Anzac Day Night Shift Nurses Party.  I had so much fun chatting with you all, and I hope you enjoyed the Anzac Biscuits :-)

Adhesive Adhesions

Adhesions is a topic that is not always associated with Endometriosis directly.  It's mostly described as something you develop following surgery.

However, adhesions are related to Endo and I will try to explain how below...

As you probably know, Endometriosis creates lesions inside your body, usually your pelvic cavity, that bleed and cause pain. 

One way that your body tries to heal from these lesions is to do what it usually does as part of the healing process when your body has sustained some kind of trauma - create scar tissue or adhesions.

Adhesions can also be produced by the body as part of the healing process following surgery, for example a laparoscopy in the case of Endo treatment.

So there you go!  A short explanation of  Adhesions and their relationship to Endometriosis.

Celebrating and Remembering

Went for an ultrasound scan this morning to see if anything has changed since my last scan in November.

In November, my scan showed that my right ovary was enlarged, which could explain the constant pain I still had on my right hand side.  There were also signs of the lining of my uterus being thickened, which is a definite sign of Adenomyosis.

Dr V started me on a contraceptive pill after that scan in November to try and reduce the severe constant pelvic pain I was suffering from.

So the scan this morning showed...

+ My right ovary appears to have shrunk back to a more normal size!  The sonographer even went so far as to tell me I had a "gorgeous little ovary" which was slightly weird, but made me smile 😊

+ There aren't any signs of thickening in my uterus any more and the sonographer said it looked perfect!

I haven't read the report yet or asked Dr V what she thinks of the latest scan, but I'm really happy that things are looking a bit more like they should.

The only thing that scares me is a thought that occurred to me yesterday.  The fact that the little blue contraceptive pill that I'm taking is probably the only thing standing between me and the constant severe pain that I had every waking minute before I started taking it.

The question in my mind is 'Does this mean that I'm going to have to stay on Norimim for the long term just to be able to function?'  Something I'll have to ask Dr V on Friday I suppose.

Today isn't just about celebrating ultrasound results though...

Exactly 1 year ago today, I went under the knife for the first time in my life to have a Diagnostic Laparoscopy.

It was Thursday 16th January 2014.  I had been in hospital for 3 days this time - my second admission in 7 days.

I had been offered the following 3 options...

+ Do nothing and see a Gynaecologist in an Outpatient clinic at some point (no way was I taking that option and going home in constant pain to wait who knows how long)

+ Go on the contraceptive pill for 3 months and then consider surgery (again I couldn't bear the thought of waiting any longer to try something else, I just wanted to know)

or

+ Go on the acute list and have diagnostic surgery while an inpatient

After a few tears and a serious discussion with my Mum, I chose to have surgery while in hospital.  The doctors tried their best to discourage me from having surgery by quoting 'there's only a 50% chance we'll find something' and 'we probably won't find anything', but I wasn't going to be discouraged.  I'd had enough of struggling and being in pain and just wanted to know either way what was going on.

After being on standby for a spot in theatre since Wednesday morning, I went in for surgery on Thursday morning. 

Yes, I cried beforehand and I'm not ashamed to admit it.  It's a really hard decision to make to have surgery when everyone is trying to put you off, but I stayed strong and stuck with my decision.
Turns out, my anaesthetist was a friend of someone I know whose daughters I babysit for, so Ev helped me out with a few jokes and a good chat before I went under.  I think God must have sent Ev to be my guardian angel and he really made things easier.

And then I was out of it 😴

The next minute, I was in Recovery and someone was shouting my name in my ear (or that's how it sounded to me in my drugged up state). 

Eventually, I asked the nurse what they'd found, but she wouldn't tell me and said the doctors would come along later and explain things to me.  Fair enough I thought and I was still pretty out of it  anyway.

The funniest part was when I was still half asleep in Recovery, someone came into my cubicle and asked the nurse looking after me what they had found during the surgery.  She said to whoever it was "they found Endometriosis everywhere." 

So that's how I found out I had Endo!

They obviously thought I wouldn't hear, but I did.  The relief was huge because then I knew I had made the right decision to have the surgery.  I also had a diagnosis, which was awesome, because it's definitely easier when you know what you're fighting.

Today, I am both celebrating and remembering in equal measure.  People have said to me that one day the memories will fade and it will be like it never happened, but honestly I don't think I will ever forget the day I was diagnosed with Endometriosis.