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.

Final Countdown

Off to see Dr V in the morning.  The day is almost finally here. 

I shouldn't be nervous about this.  I should feel calm, prepared and all together.  But I don't.

Why, when I'm going to a medical appointment does it feel like I'm going to be standing in front of a firing squad instead?  Why should I feel uncomfortable when a doctor is supposed to be here to help me?

I'm just feeling a whole mixture of emotions: scared, unsure, hopeful, realistic, nervous, worried...

Just really hope it goes well tomorrow and I come out feeling secure in the knowledge that there is a plan in place that is going to help get me back on my feet, and soon...

Oh Boy - what next???

If you are squeamish or don't like graphic descriptions, it might be a good idea for you to press the back button and read a different post on my blog.  :-)

----------------------------------------------------------------------------------------------------------------

Can't believe this.  I've been on the new pills for just over a week now and they have actually made the pain a lot worse!  What did I do to deserve this?  You take medication on the advice of a Doctor in the hope that it will help (or at least not give you too many nasty side effects) and then it just doesn't.  It's gotten so bad now that I have had to break out the Ibuprofen (which doesn't help much anyway) just to get me through the day.  This means that  things are really bad because I have quite a high pain threshold and can usually put up with quite a lot without taking any meds.

To get it out of my head, I am going to describe the excruciating pain that I am in here.  This is the best way I have thought of to accurately describe how this pain actually feels to me, so here goes...

It feels like someone has split my lower abdomen open with a sharp knife, thrust their hand inside and is trying to grab hold of my internal organs and pull them out through a small slit.  

That sounds like I'm exaggerating, but trust me, I wouldn't make something like that up.

The fact that I get side effects from pretty much every medication I have taken used to bother me, but now I just put up with it.  However, I was definitely not expecting pain this excruciating to turn up.

Don't feel like I have much left in my Bravery & Strength reserves any more, but I'm going to try to keep going and keep fighting this until I am well enough to get on with my life!

                           

Dr V to the rescue - hopefully...

Today I finally got hold of Dr V as I can't keep going on like this.  The pain is getting worse every day now and I have absolutely no energy due to pain and other related Endo symptoms.  Not sure exactly what is playing up - guess it's just a combination of my Endometriosis, Adenomyosis and grumpy ovary!

Dr V assures me that my body rejecting the medication is quite normal and that she will just have to try me on another pill instead.  I have just been and filled the new prescription, so I'm hoping that these pills will do a better job than the last ones because I'm really struggling right now.

I'll just have to see how things go...  Really hoping these pills will work because I can't bear the thought of continuing to feel like this for another day, let alone another couple of months!

                                

Endo Empowered!

On the one hand, I am feeling a bit Endo Empowered lately.  It's like a little celebration every day that I can carry on with less pain than I've had since 2013.  To know that the Endometriosis, Adenomyosis and troublesome ovary are all under control on the pill is a good thing.

But on the other hand, there is the fatigue! The dark heavy cloud that I am living under every single day with what appears to be little or no relief whatsoever.  It's hard to carry on some days when you are so exhausted and lacking in energy, which in turn leads to being unmotivated.

As usual, it's swings and roundabouts in my Endo world.  My job is to just try and find the silver lining hiding under every cloud.

P.S.  Photo below is the view from my hospital window last year.  Pretty nice if you can get a window cubicle as it makes hospital life a little more bearable ☺

Another date with Dr V

Today I had another date with my favourite medical person Dr V.

This was probably my first appointment where Dr V and I both came away happy, which is saying a lot considering we have been together in a Doctor + Patient relationship since January 2014.  When I walked into her room in November she said to me "The last 2 girls I've had in here have gone away happy, so I hope you can be the third."  Unfortunately back then, it wasn't to be as I was still in a lot of pain every minute of the day.

This appointment was different though, mostly because in the last couple of weeks I have been experiencing significantly less pain.  This is awesome for a lot of reasons, but mostly because it's the most 'pain free to an extent' that I have been since mid 2013.  For Dr V, it was probably awesome because that means that this is the first drug that she has tried me on that has actually worked in reducing my long term pain.

Another triumph for me is that now that this drug is working to reduce my pain, no other Doctors can tell me that I have nerve pain / neuropathic pain / habitual pain etc.  My pain is real and it has a gynaecological cause, so to the Gastro Doctors, GPs, Pain Specialists I WAS RIGHT ALL ALONG!

Dr V is really happy altogether with my progress because my pain is reduced and my latest ultrasound scan came back looking good and like everything was gradually settling down.  She wants to see me again in the middle of the year and said to me before I left "Now maybe you can have your life back", and to be honest, that's exactly how it feels.

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.

Flicking the Hormone Switch

Dr V kind of gave me 'the doctor look' when I went to see her in late November.  Endo girls, you'll know what I mean.  The look a doctor gives you when you keep going back to see them and you're still in pain and yet, they sit there and the look on their face says 'now what am I going to do with you.'

Each time I go to see her, she keeps on reminding me that "you only have mild endometriosis." 

This is true in one sense, as there was more Endometriosis present at my diagnostic laparoscopy (performed by a different Gynaecologist ) than there was when she went back in 8 weeks later to remove it.  I know, strange but true! However there was also more Endo found during my third surgery another month after that.  Overall, my level of Endometriosis is about Stage 2.

Dr V tells me that I only have "mild Endometriosis" in her opinion and I respect that.  I'm sure she sees much more severe cases every day in hospital and clinic.  Bearing in mind though, there's no correlation between the amount of Endo found and the amount of symptoms you may experience.

Now, to the Pill...

So, I've been on a contraceptive pill for just over 6 weeks now, as Dr V put me on it back to back (skipping the sugar pills) when I last went to see her.  Trying this to see if it helps the severe pain I was in every waking minute.

Yes, it has helped with the pain quite a bit, to the point where I'm now only in pain 2 - 6 hours per day, instead of every waking minute.  This is really nice, as it is giving my body a break from being in pain every day since December 2013!

However, as much as it's nice to have less pain, I've begun to wonder...

+ Will I have to be on the Pill long term (I'm talking years here) just to keep my pain under control so that I can function?

+ How long will the Pill be able to control whatever is happening on the inside for?

Bearing in mind here that I have Endometriosis, Adenomyosis and a questionable misbehaving right ovary!

+ What will have to happen when, like another Endo girls experience, the Pain starts to get really bad again while I'm still taking the Pill? 

+ Then, when my only weapon in the Endo battle (the Pill) has failed me, what then? 

All these questions that I have no answers for.  Endo is such an unknown quantity that it's impossible to predict what will happen tomorrow, let alone in 6 or 12 months time!

Off to see Dr V on the 23rd, so will listen to what she has to say about all of this.

In the meantime, now that I have got all the thoughts swimming around in my head written down here, it's time to stop asking myself questions I can't answer and just focus on one day at a time. ⌚

A Year Ago Today

December 17, 2013.  The first day that a Doctor sat across the table from me, looked me in the face and told me they thought I almost definitely had Endometriosis just from taking the time to listen to my story and growing list of symptoms.  This was an important day because I had finally heard from a medical professional the phrase that I had been both hoping and dreading to hear in equal parts. 

I was sitting in the office of a male General Surgeon (yes, not a female Gynaecologist!) who I had been recommended to by a friend who works in the medical world.  Having had multiple GP visits and seen 2 female Gynecologists at different times during the previous 7 years and getting nowhere, I asked my friend for a recommendation as it was time for a different approach.

It was a relief just to sit there and hear someone finally say that they knew what was wrong with me, why the pain was becoming so unbearable and why more of my life was being disrupted due to my declining health.

To think that a whole year has gone by since that day is a bit scary to be honest with you.  It's like the last 365 days have been swallowed up into a big black hole or something... 

In celebration of the end of this year (and I can tell you I'm glad to see the back of it) here are some random firsts, facts and figures from 2014...

My first... 
+ Admission to hospital
+ Overnight stay in hospital
+ Hospital meal (glad that's over)
+ IV line insertion
+ MRI Scan 

+ Endoscopy
+ Sedation
+ General anaesthetic
+ Surgery
+ Patient Controlled Analgesic :-) 


And here are some totals from my 37 days in hospital during 2014... 
1 Endoscopy
2 MRI Scans
3 Laparoscopic Surgeries
4 General Anaesthetics
5 Ultrasound Scans 

Outpatient appointments attended, pills swallowed, blood tests - too many to count...

I'm just thankful that it's December 2014 and not December 2013 which would mean I'm right back at the beginning of this journey.

Also, you know how people say when they have done something that they wish they had known about it in advance, as they would have done things differently?  Happy that I didn't know beforehand how long and rough this journey was going to be.

I will write more about different parts of my Endometriosis journey in future posts in the New Year.  Until then, wishing you all a Happy New Year and may 2015 bring less pain and better health for all of us Endo Girls!

30 Things About Living with Endometriosis You May Not Know

I'm in quite a bit of pain today.  The new Pill that is supposed to be helping with my pain did reduce my pain a little for a few days, which was a nice break. However, the last few days, the pain has escalated again and I am struggling.

Blog surfing is a good distraction technique and I discovered this list of questions on a couple of other Endo Blogs, so I thought I would give it a go.  

For me, some of these questions are quite personal and reveal more about my illness and how I manage it.  Feeling a bit shy about sharing, but here goes...



1. The illness I live with is: 

Endometriosis.  This is a painful condition where tissue that normally lines the inside of your uterus - the endometrium - grows outside your uterus.  In Endometriosis, displaced endometrial tissue continues to act as it normally would - it thickens, breaks down and bleeds with each period.  Because this displaced tissue has no way to exit your body, it becomes trapped and causes severe pain.  Surrounding tissue can become irritated, eventually developing scar tissue and adhesions - abnormal tissue that binds organs together.

I also have Adenomyosis, which is a condition in where the Endometrium (uterine lining) implants itself inside the muscular wall (myometrium) of the uterus, where it's not supposed to be.  I have been told that my uterine wall has a Venetian Blind appearance, which is an odd description, but is how Adenomyosis can appear and show up on an Ultrasound Scan.

Adenomyosis is NOT the same as Endometriosis.  However, many women who have Adenomyosis also have Endometriosis.

Just like Endometriosis, the cause of Adenomyosis is unknown.


2. I was diagnosed with it in the year: 

2014 


3. But had symptoms since: 

2007 


4. The biggest adjustment I've had to make is:  

There are lots of answers to this question, but what immediately springs to mind is getting used to being in hospital and seeing doctors on a regular basis.  Also, having to tell the whole story about this year over and over again because they say they 'want to hear you tell it in your own words' when they could just take the time to read my file, even though what is quoted is quite often incorrect.  I have broken down in tears trying to explain to doctors about everything that has happened, because I try to live each day as it comes and reliving everything is painful and hard for me emotionally.


5. Most people assume: 

Most people haven't heard of Endometriosis and don't know that it exists. Those people who like to think they know about it, think that it just means you have painful periods and the rest of the time you are fine.  This is definitely not the case as I am in pain every day and have other symptoms including nausea, sleep issues, bloating and chronic fatigue.  Also, pain relief doesn't work well a lot of the time, so when people say "Oh, just take a Panadol", it doesn't work like that.


6. The hardest part about mornings are: 

Waking up in the morning and due to the fatigue, not feeling like you have slept at all, even though you have.  Then getting out of bed and your body realising it's awake, which is when the pain and other symptoms really start to awaken and kick in.  Also, wondering how today is going to be as you have no control over it.  Will this be a good day and will I manage?  Or, will this be a crap day where I'll have to grit my teeth and suck it up?


7. My favourite Medical TV Show is: 

I don't watch Medical TV Shows very often, since my life this year pretty much is a Medical Show all of it's own.  However, when I do watch them, my favourites are 24 Hours in A & E, One Born Every Minute and The Night Shift 


8. A gadget I couldn't live without is: 

My phone.  It's where I do most of my blogging and emailing and how I stay connected to the outside world and also has lots of music loaded onto it.  Music is one of the things I rely on as a distraction technique and I can tailor what I listen to depending on my mood and my pain levels. 


9. The hardest part about nights are: 

Sleeping has been an ongoing problem for me since December 2013 and I haven't had a full, decent nights sleep since then.  I am now on medication to try and get me to sleep, which does help, but still can't replace the deep natural sleep that I used to have.

Pain and other symptoms can feel much worse at night after my body has struggled through a long day.  There is nothing else to focus on lying there in the dark, so it can be hard to distract yourself and ignore the pain.


10. Each day I take 6 tablets: 

6 is a normal day for me at the moment, but depends on what other medications my doctors might be trying or if I am on any natural supplements. On days when pain or other symptoms are worse, additional meds may be required.  One day, I would like to be taking 0 tablets, but I will take what is necessary to control my condition and get me through the day, as long as my sensitive body doesn't have too many side effects.


11. Regarding alternative treatment I: 

I've been to a Naturopath and taken multiple natural supplements, but after a few months I realised that nothing was really making a difference, so I have left the natural remedies behind for now.  I am receiving some natural healing at the moment alongside my prescribed medications.  I'm just hoping that my Gynecologist can help me to manage my pain soon. 


12. If I had to choose between an invisible or visible illness I would choose: 

Invisible.  As hard as it is to try and explain an invisible illness to people and no matter how frustrating and isolating it is, at least I don't look really sick all the time (although some days I do).  I appreciate being able to look in the mirror and look okay because if I looked the way I feel, it would scare you and everyone would probably take one look at me and run away screaming :-) 


13. Regarding working and career: 

I had to take Term 1 of this year off my job as a Teacher Aide at a school for young people with special needs, because I had been in hospital twice already and knew I would be having further surgery.  I have since had to leave my job altogether and have not worked at all this year as my illness has really kicked my body around and being in pain and having no energy makes working impossible right now.

I loved my job and my aim is to one day return to working with young people with special needs, although it may have to be in a different way now than how I had planned due to my ongoing health issues. 


14. People would be surprised to know: 

How much Endometriosis affects your entire life.  Your relationships with your family and friends, self-confidence, future plans.  So many things are affected and having Endometriosis can really take a toll on you emotionally - sometimes you just have to have a good cry and let it all out. 


15. The hardest thing I've had to accept about my new reality has been: 

Accepting that I am going to have to live with this for the rest of my life. I have had surgeries, and that has helped a bit, but I am never going to go into remission or be cured.  It's all about managing my condition and hoping that I don't require more surgery in the near future.



16. Something I never thought I could do with my illness that I did was: 

Talk about it openly and publish a blog on the internet!  I would also like to talk to some other Endo girls my age - who knows, maybe they will find my blog and say Hi. 


17. The TV commercials about my illness: 

Do not exist.  It's so frustrating that there is no awareness about Endometriosis when I have heard that it is more common than Asthma or Diabetes.  Women with Endo may be strong and put on a brave face, but we need support.  It is especially important for all of us to do what we can to start discussions about this, because I don't want any more young women to feel alone and like there is no one who understands.


18. Something I really miss doing since I was diagnosed: 

Going out whenever I want and for as long as I want, without wondering if I am going to be in pain and monitoring my activities due to my chronic fatigue.  I never had to think about these things before. 


19. It was really hard to have to give up: 

My 'free as a bird' attitiude.  I now have to think more about what I do and how I look after myself, which can mean that I miss out on family gatherings and events, or don't enjoy myself because of the way I am feeling.


20. A new hobby I have taken up since my diagnosis is: 

Blogging and Playing the Acoustic Guitar. 


21. If I could have one day of feeling normal I would: 

Spend the day with my close family and friends walking along the beach, going out places and running around with all the energy in the world!


22. My illness has taught me: 

Life isn't always fair and you never know what will happen and when.  I try to live each day as well as I can and appreciate what I can achieve instead of dwelling on what I can't do right now. 


23. Want to know a secret? One thing that gets under my skin is: 

People who try to push advice on you or convince you to do things when they have no understanding of your illness.  I know they are only trying to help, but sometimes trying to explain to them why it's not a good idea doesn't even make them stop and think!


24. But I love it when people say: 

The simple things like "I'm here for you" or "Let me know if there is anything you need."  Even a simple smile or hug can make all the difference. 


25. My favourite motto, scripture, quote that gets me through the tough times is: 

How could I choose just one?  Positive words and quotes are really helpful when I am feeling down and need a reminder to be positive.  This one was actually on another Endo Girl's Blog, but I liked it, so thought I would share it here.

 “... Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it's the worst possible condition, because, if it is, we're finished anyway, whether we go on the journey or not, and it's better to die having made the journey we're been longing for than to be stifled by our longing.” ― Thomas Bernhard 


26. When someone is diagnosed I'd like to tell them: 

Wow!  Where do I start?  First of all, you are not alone, no matter how lonely your diagnosis may make you feel.  

You will need people who are supportive and will take the time to listen to you, so find a GP and Gynaecologist who you feel comfortable with.  It may not be the first doctor you meet (it certainly wasn't for me), but this is going to be an important, ongoing relationship, so make it count.   

Be open with your family and close friends when you are diagnosed.  It will help them to understand your limitations and support you better.

Research, but don't overdo it.  Yes, the Internet is a great resource and it can help you to understand your condition better.  However, be aware of reading forums and other places where women share their personal experiences, as everyone is affected differently by Endometriosis.  There are different stages of the disease and each woman will have a variation of symptoms in both their presentation and severity.  As Dr V has told me, there is a point when you just need to stop googling and focus on yourself.

Trust yourself.  You know your body best and if you feel like things aren't right or you're not sure of a treatment or medication, don't stay quiet.  Voice your opinion and keep telling someone until they listen to you.  Doctors don't know everything (boy, have I found that out!), so ask questions and make suggestions as it will help them to help you.

Finally, having Endometriosis will be something you will have to manage for the rest of your life, but it's not a life sentence.  Everyone's Endo experience is different and you will still be able to live an amazing life, it just might be a little bit different than before.


27. Something that has surprised me about living with illness is: 

People's lack of understanding of how you can have an illness for a long period of time.  It seems like they think you should have just 'gotten over it already' when it's not always that simple.  Like when a member of my family phones up and says 'So, are you better today?' and I feel like saying "What do you think???"  Also, how much your life can change in such a short amount of time. 


28. The nicest thing someone did for me when I wasn't feeling well was: 

Probably my Mum, who has been with me every step of the way.  Sitting with me when I'm in pain and trying to calm me down when everything has just become too much.

Also, Nurse T in the Gynae Ward at my local hospital.  She could just tell by looking at me when I needed pain relief, a cold flannel or some anti nausea meds.  She also took the time to talk to me about everyday things, which definitely helped me to laugh and break the monotony of yet another hospital stay.  


29. I'm involved in Endometriosis awareness month because: 

Endometriosis Awareness Month isn't really publicised in New Zealand.  I would love to change that and build more awareness and support for Endo Girls everywhere.  I've been there, newly diagnosed and unsure, so I would like to help others when they need it most. 


30. The fact that you read this makes me feel: 

A little embarrassed, but mostly happy.  Thankful that you took the time to read a little bit about me and my Endo experience.  Also interested to know what you thought of my blog, so leave a comment or email me and say Hi. 

V Mail

An email from Dr V arrived this morning.

She was just letting me know about the results of my blood tests that I had done after my appointment last Friday.

I was having my CA125 and CEA levels checked to make sure there wasn't anything sinister going on with my troublesome right ovary.

Results came back today and Dr V says they're towards the upper limit of the band, but still within the normal range.  

As Dr V always tells me "normal results are always reassuring , but can be confusing as well". 

This is definitely true in my case, as normal results don't give any indication about what is actually going on.

Oh well, I will just keep going and see how the next couple of weeks on this new pill go.

My date with Dr V

So, today was the day.

After waiting 3 months to go back and see my Gynaecologist, I met with her today.

Funnily enough, there I was sitting in the waiting room when someone tapped me on the shoulder.   I turned around and who should I see smiling at me but N, who I spent some time in the bed next to on one of my hospital admissions this year!  Generous hugs and hello, how are you's followed.  It was lovely to see her and nice to catch up as you always wonder how the people you meet and get to know in hospital are doing.  By coincidence, N is also a patient of Dr V, so that's why we were at clinic on the same day.

After N left and a bit more waiting, it was time to catch up with Dr V.

Dr V is unsure of the cause of my ongoing abdominal pain, but has decided to put me on a contraceptive pill continuously for a couple of months to see if it helps relieve the daily pain I am experiencing, or at least improve the severe pain during my periods. 

From the ultrasound that I had done recently, Dr V says she can see that I definitely have Adenomyosis as well as Endometriosis.  I don't know a lot about that at this point, but that's another conversation I need to have with Dr V.

She also told me that it looks like my right ovary could be turning polycistic, which isn't great, so we have to do something about that now before it gets any worse.

Dr V also sent me for more blood tests this afternoon.  I will be having another ultrasound scan done to see how things look before I go back to see her again in 8 weeks so she can monitor me.

It's hard for me in some ways, after the Endometriosis diagnosis and associated surgeries, to still have ongoing pain with no clear cause.  I know that Dr V is doing her best for me though, and she told me today that she will keep trying different things and persevere to help me feel better.  It's really good for me, especially as a young woman, to have that support from a Doctor and know that I can be open with her and talk to her about anything that's happening.  Think I have a really good relationship with her, so hopefully between her and me there will be some improvement soon.

On the way out of clinic today, I dropped into the Hospital Market with Mum for a look around.  Found this gorgeous turquoise cross necklace, so bought it to cheer myself up.  I'm sure there must be a study on how retail therapy is beneficial for chronic illness somewhere in the world :-)