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.

June Thoughts

Tonight I'm exhausted having spent a few hours with my Granny to help with her stroke rehab.  It's hard work, but I push through the exhaustion and keep going because I can see the results in her cognitive ability, speech and just the smiles on her face.  That and the fact that apart from Mum and I, there isn't really anyone else contributing to try and help her regain what she has lost.

Anyway, that's not why I'm here tonight...

I'm here because I've been meditating on the stage I'm at in my life right now, Endo wise and just in general really.  Doesn't help that I'm going to be turning another year older soon either, as that time of year always brings on thinking about and reflecting on the previous year.

To think that the past year has brought no real achievements for me in my personal or professional life at all scares me.  That I haven't been able to work, volunteer or study because my health has been so bad.  The only big thing that I've really achieved in the past year is to be in hospital less often, only around 3 times in the past 12 months, not counting the numerous GP and Outpatient appointments!

Just the realisation that days are continuing to pass me by and I'm not able to make any really big life changes because of my body is hard to accept.

But I guess at the end of the day, this is what God wants me to do right now.  To focus on myself and to rejuvenate and heal my broken body and mind.

A good and beautiful friend of mine, who I actually first met in hospital last year, has sent me some messages lately that have meant a lot to me and sometimes brought me to tears.  She is helping me, through her encouraging and positive messages, to come to a place of acceptance with where I am at in life right now.

S, you may have no idea how much your messages are helping me right now, but I just want to thank you from the bottom of my heart.  People might say that they're only words, but it's how you interpret them that counts   Thank you so very much for supporting me, it means so much to me.

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 :-)

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.

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.

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. 

Diagnosed

I guess my Endometriosis diagnosis came as a relief to me, more than anything else.

No more wondering if what I had been going through was normal or not, because I finally knew that it wasn't.

As my health went further downhill towards the end of 2013, I was taking time off work nearly every month or cancelling my plans so I could be at home.  It was much easier to get through my perwor each month when I could just work through it and not have to be out putting a brave face on even though I was in severe pain and felt rotten.

Things got so bad that I ended up going to see yet another doctor about my periods in December 2013.  I was referred to a specialist just before Christmas 2013 by him, but he told me that I almost certainly had severe endometriosis.

That was the first time any doctor had ever mentioned Endometriosis to me and told me that it was likely that I had it in the same sentence.

I did know a bit about Endometriosis already, as my Mum had it and we had discussed the possibility of me having Gynae issues on several occasions.  Also, she was keeping an eye on me and what I was going through as she was fully aware that it was possible for me to have Endometriosis because of her history.

It was a relief to hear that something was probably wrong as when I had been to see multiple GPs and a couple of Specialist Gynaecologists over the years, they didn't really know if there was something wrong or not and just said to try different pain relief.

That was the beginning of my Endo diagnosis journey.  I will continue to write more about my Endometriosis diagnosis and the events since then in future posts.