I'm Not An Inspiration

Lately a couple of the lovely young women in the Endometriosis Support Group that I run have told me that I'm an inspiration to them. 

It's a weird thing to hear, because although I know it's meant as a compliment, it also makes me feel a bit uncomfortable to be honest. 

There's this whole impression people have that anyone who, for example, is in a wheelchair or has cancer is inspirational, and in some cases they're put up on a pedestal and told how brave they are etc.

What I want you to know is that I (and most others with chronic illness) don't want to be 'inspirational' or be made to stand out just for living my everyday life. Yes, my life is very different from yours, and yes, I struggle, but I'm not here on this earth to be a role model or inspiration to anyone. 

I just want people to acknowledge and try to understand how my illnesses affect my life, and support me as best they can.

But I don't feel it's right that I should be called inspirational over anyone else. All of us humans are just trying to live the best life we can, and all of our circumstances are different. There's no fair way to compare any one person to another person, because we're all different and unique, and that is what makes the world such an interesting place. If we were all the same life would be dull, and they do say that variety is the spice of life after all!

And really, I don't feel like an inspiration in myself, and a lot of days I actually feel inadequate because of my illness. I feel like I'm not doing enough, or being enough or using my time to it's fullest potential.

But I'm doing the best I can with what I have in this moment, and that's all any of us can do.

I'm not an inspiration, and I'm quite happy with that. I'm just one sick girl with a laptop, trying to make her own way in this crazy and diverse world.

Flying the Endo Flag

Sometimes you just have to stand up.  You have to be the brave one who gets out there and lets the world know.  Once someone starts, others will follow but there is always one person who starts the ball rolling and is the first link in the chain.

This week that person has been my Endo Angel friend Brooke.

She has decided to organise all of us Endo girls to complete an awareness project, which is based on the idea of the Chronic Lyme Disease awareness website 'Suffering the Silence.'  The idea is that you paint on your arm the name of the disease or chronic illness that you have, take a photo and share it on social media to raise awareness of all the health conditions out there that fall under the banner of 'invisible illness.'

Invisible illnesses are the ones that people fight every day, but you can't see.  We may not be in a wheelchair, on crutches or have any visible outward signs that we're unwell, but on the inside we are suffering just as much as others with recognisable illnesses.

Endometriosis is a classic example of an invisible illness.  The support group that I started about 6 months ago now has over 100 members, and if you browsed our profile photos on social media, you would see that we look like beautiful young women and appear completely normal.  But the internal battle that we fight daily is anything but pretty.  The chronic pain, nausea, draining fatigue, insomnia, bowel and bladder issues, interruptions to work, study and social life - I could go on.  But the point is that none of these symptoms can be seen by the average person, which leads to negative comments like 'It's all in your head' or "You look fine, so why are you still sick?'

This is the reason why we need to put ourselves out there and raise as much awareness as we can.  Why, when people ask us what is wrong with us, we try to educate them a little bit about our invisible illness - Endometriosis.

When our awareness project is complete, I will post it here for all to see.  I will share it with my friends via social media and email.  You know why?  Because I'm not afraid to stand up and say "Yes, I have Endo."

Awareness is one way of helping ourselves.  The more people hear about and talk about Endometriosis, the more chance there is that people power will make change to improve the healthcare that we receive, and one day bring about a CURE.

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.

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. ⌚

Inside the mind of a GP

I was hoping for a little support from my GP when I went to see her this morning.  Since this has all been going on for over a year now and I am really starting to struggle, especially with my worsening fatigue and racing heart.  You would think that a little bit of sympathy and support wouldn't be that hard to get - right?

Wrong!

Talking about my fatigue that has so far lasted 8 months (very briefly) - "You're just tired because your body is fighting some kind of unknown allergy.  "Here, take this antihistamine for at least 4 weeks (even though she's put me on it before and it kept me up at night with terrible stomach cramps and diarrhea until I stopped taking it) and then we'll see what happens.  Oh, and by the way, it will help with your nausea as well!" 

Talking about my mysterious bloated stomach - "Oh, you're probably constipated."  No I'm not, I know what that feels like from when all the pain meds in hospital made me constipated and I would definitely know if I was!

Talking about my ongoing pelvic pain - "Is it worse than before, or just the same as before?"  Yes, it's the same as before, but it was pretty bad before, so shouldn't you be concerned that it isn't getting any better?  "Oh, I'll just make a note of that."  Great, how is that going to help me???

All the "helpful advice" I got from her today was to be told that I was dwelling on my symptoms too much and that I should learn to distract myself and not focus on how I was feeling!!! 

Mum (who comes to all of my medical appointments as my support person and second brain since my memory is so rubbish) stepped in at that point and told GP that I was really positive and pretty much permanently used the art of distracting myself to just get through the day.  I also added that I tend to go and write down what symptoms I am experiencing (and at what level), then just go and do something else.  Basically, my attitude is if I'm dealing with less symptoms that day, then that's great and I will enjoy it while it lasts.  If it's a bad day, then I just do what my body can handle and settle for that.

There is so much frustration inside me right now, as I feel like I am being treated like a complete idiot and every time I go to see my GP they just say "Here's another tablet - try this" with no real explanation about what might be wrong.  Or alternatively just say there's nothing they can do to help (like my last ex GP), or tell me to wait until my next Specialist appointment, which could be at least  3 -  6 months away depending on how long I've had to wait.

My GP also seems to have a low opinion of me when it comes to trying new tablets.  She says to me to "make sure I give this one a good go" like I don't want to try anything new.  This is not the case at all - I will try anything!!!  Just because I had to stop the last 2 tablets that she put me on due to side effects including stomach cramps, diarrhea, extreme tiredness and blurred vision does not mean I am not open to trying new things!  It just means that those tablets obviously don't agree with me.  Then she asks "How do you know that those symptoms were caused by the tablets I put you on?"  Um, because I didn't have these symptoms until I started the new tablet, and after I stopped it they went away - isn't that logical enough for you?

GPs seem to have very little understanding of Endometriosis and how to take care of their patients who have Gynae issues along with other mysterious symptoms in my case.  Also, they never believe you when you suggest that your other symptoms including worsening fatigue and my fabulously bloated stomach (otherwise known as Endo Belly by some of my bloggy friends) could be related to Endo.  They just say "No, those aren't classified as Endometriosis symptoms."  I get better advice from my fellow Endo Bloggers and other young women who are going through similar things to me than I do from any Medical Doctors - isn't that saying something???

OK, enough GP ranting now.  Time for a song to remind me that I can carry on and that one day everything will be all right again.

                              

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. 

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 :-)