I Don't Know About You, But I'm Still Feeling 22

Tonight as I sit here in my cozy bedroom with my little lanterns providing soft light to my thoughts, I'm musing about the coming year.

No, it's not New Year's Eve, but the eve of the celebration of the day of my birth.  Tomorrow, I turn another year older, so in a way it feels like a mid year New Year and another fresh start.

What do I want from this year?  Well, I would like to be cured of my chronic illnesses, but magic wands are still in the early stages of research and development!

Seriously though, what would I like to see happen this coming year?  Some thoughts...

• For my health to improve further, or at least stabilise.  This would provide me with a more stable platform to live my life by for sure, and would also make planning for the near future just that little bit easier!

• To find a medication or treatment to relieve or at least manage my symptoms.  This really has been an ongoing struggle for me, and I've never found anything that works really well for any longer than about 2 weeks at a time.  If that could change, it would be lovely.

• To do well in my final University papers and graduate in July!  It's only a short course, but I am so proud of myself for achieving this during 2016 despite all of the challenges life and my health have thrown at me.  Now to decide if I want to do the follow on course...

• Get back into my guitar playing, and sing more.  Guitar has fallen by the wayside recently as I have just been too fatigued to work on it, but I'm hoping to get back into it soon.  Music is one of my greatest joys and is a wonderful form of stress relief, so I will make more of an effort as energy and my Uni schedule allow.

• To develop a greater acceptance for where my life is at, and to be at peace with the fact that I'm exactly where I am meant to be.  Long term goal this one, but with my faith, family support and perseverance, I'm determined to be more accepting and patient with myself.

• Make sure I nurture my body and love it as much as I can in every way possible.  To feed it well, exercise regularly, rest when it tells me and just to take great care of it.

• Figure out a practical career path.  The Physiotherapy dream is still burning bright in my heart, but at the same time it feels as if it's fading away from me.  I know I would make a brilliant Physio (not to blow my own trumpet), but I'm coming to terms with the fact that pushing myself into 4 years of full time University study may not be the smartest thing to do!  I'm not ruling it out, but could really do with a solid Plan B in case it doesn't work out the way I have always hoped it would.

• To get back into art and creative pursuits more.  I am loving my University study, but it's exhausting me to the point that I don't really have the energy to do much else!  So I would like to find a little bit more of a healthy balance in my life between my study, online, real and creative worlds.

• For my family to know how much I appreciate them.  Saying thank you never feels like anywhere near enough of a repayment for all that they do for me on a daily basis, so it's kind of a wish really, but I hope they know in their hearts how grateful I am to have them in my life.

• To one day be well enough to take my brother out on an expedition like he has done for me so many times, and to just laugh and have fun with him without being in pain or having to find a bathroom.  That would be nice.

• For people to see me as normal, and to see past my illnesses.  I'm still a lovable, creative, kind person with a pretty good sense of humour, and I would like more of the people in my wider circle to realise that and treat me like they're talking to me as a person, not just someone with illnesses.

And just to live another great year, taking as many opportunities that come my way as I can, having fun, getting to know more people and just living the most beautiful life I can.

Losing Control

I cried this morning.  I'm not ashamed to admit it, because it's perfectly healthy to express your emotions.  To those girls out there who bottle things up and keep everything on the inside until it becomes utterly overwhelming, know that it's not weak to cry if you need to, no matter the circumstances.

Anyway, onto today's post..

Today I just wanted to be normal.  To have a normal amount of energy and stamina, and just be able to go out into the world and do things like everyone else can.  Today was a day that I mourned the loss of my old life, and reflected on the new and different, but still good life that I live today.

Living with a chronic illness not only changes how you live and the things you're able to do, but also to an extent it changes who you are.  For me, in the beginning all of this change and uncertainty it was very difficult to take in and adjust to. I would like to say that I have gotten better at accepting change in my life, and the constantly shifting landscape of my health, but some days I definitely still feel like a fish out of water!  I've been reflecting on change and control of life over the last couple of days, so I thought I would write a few of my thoughts here...

Let's all face the facts here - we all crave control in our lives.  Control of what we do, where we go, what we wear and what we say and how we act towards others are just some of the things that we get to decide on each day.  A lot of these decisions we don't even consciously register in our minds, because they are made in a split second by the pre-frontal cortex in our brain.  Having control of different facets of our lives makes us comfortable in the knowledge that we are in the driver's seat, and helps us to 'live in our comfort zone'.  Everyone likes to feel like they're in their 'comfort zone', am I right?

Comfort is therefore the complete opposite of fear.  Fear generally rears it's head when we are facing change, or coming to terms with something, for example a new job, house move or the start of a course of study at Uni.  In all of these 'new things', there is an element of loss of control on our part, because we are jumping into something new and unknown that we haven't done before.  So the feeling of loss of control and fear of the unknown come together, and pretty much make us freak out!

You may be asking 'What the heck does all this rambling about control have to do with chronic illness?'  Well, in a way the same principles of loss of control and fear apply to chronic illness in the same way that they do in most people's everyday lives.

Thinking back to before my Endometriosis diagnosis, I had a job that I loved and was forming a 'plan' in my mind about what I was going to do next regarding Uni etc.  All of this came crashing down around my ears as I got more and more unwell, had to leave my job and became this creature floating around in pain all of the time!  Getting the diagnosis helped for sure, because then I knew that it wasn't all in my head and that I was being taken more seriously now that I had a medical 'label' so to speak.  

But to be honest, my feelings of fear and loss of control only worsened, because now I had this new, scary diagnosis and I really had no idea what I was going to do.  So, similar to what you may experience in an everyday sense, I was basically plucked out of my life by one of those metal cranes like in a toy vending machine, and plonked into this whole new medical world which I had no idea how to navigate!

Over the past 2 years I have adjusted and it has become easier to live this new and different life of mine, but still, the goalposts are constantly shifting and there is always one thing or another to deal with.  I'm definitely not some shiny, brave chronic illness person who feels no fear and has a magic wand to solve all her problems!  Some days it all just seems like too much to cope with, but mostly I work through the fear and just break down into steps how I am going to cope with or manage what is happening to me in that particular day or moment.

An important part of coping with this is to have a support network around you, so that you know you have someone to talk to if you need to.  I'm incredibly lucky to have a supportive family, a few close friends I can confide in, and my Endo Angels support group who are always here to support me and lend a listening ear.

Comment below and let me know if you too have feelings of fear and loss of control in your life.  If you do, know that everyone does no matter what their situation, and it's perfectly normal!  It's just about finding some coping strategies that help you to work through whatever you may be going through.

Gee, this post feels like I'm totally rambling!!  But, it's what has been on my mind lately, so I thought I would come here and share...

So, How Are You Doing?

That question that every chronically ill person grows to dread...

"So, how are you today?" or "Are you feeling better today?"

On the surface, it sounds like a lovely, caring thing to say, and in most cases it is.  When my immediate family and close friends ask me these questions, I know that they genuinely care about how I am and want to know how I'm getting on.

But as time goes on, you do grow tired of being asked if you're any better by some people.  Those people that just don't seem to understand that your illness isn't going away.  Those people who wonder if you're making it all up because despite having multiple surgeries and seemingly trying a new medication every week, you STILL aren't better.

It seems callous to say this, but it feels like when they ask, they just the instant gratification of knowing they asked you, and don't actually want any details of how you're getting on with your health.

I have developed a response for when those people ask how I am.  I just say "still here" and leave it at that.  Often they immediately change the subject and talk about something else (usually themselves), but surprisingly sometimes they have a different response.  Once in a while, they actually continue on a conversation path about my health and ask more questions.

Not sure if this is the reason, but I like to think that it's because they're so surprised by my response, that they can't help but want to know more...

My Wish

A friend brought her 11 week old baby to visit us yesterday afternoon. 

It was lovely to see them, and to meet her beautiful son, but it was also hard for me in some ways. 

To sit there watching her playing with her son with so much love in her eyes. To see her holding him close, and able to talk of nothing else except all the new experiences they've had together in the first 11 weeks of his life.  To see his striking resemblance to her, and think that she has created and carried this baby within her own body.

Don't get me wrong, I'm not jealous of her or resentful that she has a child of her own.  In fact it's the exact opposite - I'm filed with joy for her that she has her own little person to bring up. 

It's just the thought that I might not be able to have a child of my own that scares me, and seeing her child really brought it home to me. 

How much I want to be pregnant one day and carry a child of my own. 

How I want to have that heavy but gorgeous round bump that houses my own little one, rather than just a fat fake Endo belly. 

How I want to experience all the pain that child birth brings, as long as at the end of it all when I'm exhausted and have nothing left to give, I can hold that tiny, precious, unique gift from God in my arms. 

How I want to spend hours staring into their deep blue eyes and holding their tiny fingers to try and drink in all their beauty.

Most women want to have a child of their own one day, and it's one of the most important and responsible jobs there is.  It's perfectly natural that I want to have a child of my own as well.

Having Endometriosis and Adenomyosis could bring complications with conceiving and carrying a pregnancy to full term or worse, infertility issues and even though I try not to think about it most days, it creeps in and weighs on my mind.

Every time I take a new medication that disrupts my natural hormone balance I worry about what I'm putting into my body and what potential long term effects it could have on my fertility. 

But at the end of the day, no matter how much my illness and treatments may concern me, I've decided I have to live in the moment.  It's not that I don't care about my fertility, because I definitely do, but if you focus on it all the time it's just going to eat you up inside. 

So I'm just taking everything one day at a time and trying to breathe. Trying to manage my pain and symptoms as best I can, always keeping in the back of my mind my big wish to be a Mum one day.

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 :-)

The Endo 2014!

As much as I don't want to wish any days of my life away, I have to say that I'm glad to see the end of 2014.

In January of this year, I was finally given a name for my ongoing period / health / pain related issues.  I'd had problems on and off since 2007, but 2013 was when my Gynae issues really started to affect my general health on a daily basis.

After my first Laparoscopic surgery in mid January 2014, I was diagnosed with Stage 2 Endometriosis at age 21.  I have now undergone 3 Laparoscopic Surgeries and am still suffering with ongoing (potentially ovary related) pelvic pain.  To add yet another diagnosis, I was told by my Gynaecologist 4 weeks ago that I also have Adenomyosis.  Nice Christmas gift that was!

2014 has been a journey, that's for sure.  In some ways though, I am grateful for it because no matter how tough things have gotten, I have proved to myself how strong I am.  Also, I actually have a really high pain threshold, so that's good to know and I'm sure it will come in handy in the future!

I guess looking forward, I am still left with more questions than answers...

+ Am I going to be able to get my pain under control and keep it there?

+ Is my fatigue going to improve to a point where I can work again,  not have to limit my activities and live a more normal life?

+ Will my Endometriosis and Adenomyosis become more stable so that I have less symptoms?

+ Do I have to be on the Pill for the foreseeable future to control my Gynae issues and how long will this keep them at bay before I need more treatment or  (perish the thought) another Laparoscopic Surgery?

+ Will I be able to sleep naturally again without having to take tablets to help my body remember how to sleep?

I don't have any answers though, so I'll just have to carry on with my body as it is and see what my Gynaecologist has to say at the end of January.

It has been a tough and challenging year for me, that's for sure.

Just want to say a huge thank you to my family and friends for supporting me and accepting me how I am each day.  Also, a huge thank you to all the doctors and nurses who have taken care of me this year.  You have (mostly) done the best you could for me and there are a couple of you who I'd love to go out for a coffee with one day.  ☺

Bring on 2015!  I'm ready for whatever you throw at me.

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. 

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 :-)

He's My Brother

Last night, I was in severe pain. 

Yes, I had already taken pain relief, but don't be fooled by those fake smiling people on the pain killer ads.  Sometimes they just don't work like they should.

I had my period and the achy pain that I experience every single day had escalated to a really severe level, like it has for the last 3 months.  Whether this pain is Endometriosis related or not, I don't know, but it's definitely some kind of Gynae pain.  I'll have to ask my Gynaecologist when I go to see her on Friday.  It's been a very long 3 months to wait, I can tell you.

Anyway, there I was, slumped in a chair at the dining table, really struggling to handle the pain.

Then my brother, seeing how much pain I was in, asked me if I wanted to go in the car with him 10 minutes down the road to drop something off.

Now, normally when I'm in pain, I would have said no and gone to curl up in a corner with a gel heat pack.  However, I'm trying not to let the pain rule me at the moment, which is hard but a challenge I'm prepared to take head on when I'm feeling brave.

So I said yes.

We walked slowly out to the car and off we went.

Here's something you should know about my brother.  He knows about my Gynae and other health issues, but we don't talk about it unless I feel like talking - Mum keeps him up to date when there is news I'm too upset to tell him myself.  I have nicknamed him my 'fun officer' because he looks after me by watching TV and movies with me and distracting me from whatever I am dealing with.

So, there we were in the car, me trying to breathe the pain through with gritted teeth.

He got out his phone, plugged it in and said to me "I've got a new song that I want to play for you.  When I first heard it, I immediately thought of you."

Then this song began to play...



It was a beautiful moment between us as we sat there listening to Nobody Knows by P!nk.

I was a bit emotional as the song played through and I listened to the lyrics.  I like some of P!nk's music and couldn't believe I hadn't heard this song before now, but in some ways I was glad.  It felt really special that my brother had heard this song and thought about me while he was listening.

The lyrics really hit home for me, as being a girl with Endometriosis and ongoing pain, it often feels like nobody knows or understands what I'm going through.  I just have to remember that I'm not alone and have my family around me to support me.

Thank you to my brother for introducing me to a beautiful song - you're the best!