A Period of Patience

patience

noun

1. 1.

   the capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious.

   "you can find bargains if you have the patience to sift through the rubbish"

   synonyms:

   forbearance, tolerance, restraint, self-restraint, resignation, stoicism, fortitude,sufferance, endurance;

They say patience is a virtue, and when you have a chronic illness it is definitely an attribute that you need on your side.

For me, being patient has pretty much been a permanent state of mind for the last 4 years.  Patience waiting for appointments, for treatments to work (or not), for surgery, and most of all just for something to change for the better, to improve.  In fact, I've probably been trying to have patience for a lot longer than that, as I always hoped that in the years prior to my endometriosis diagnosis that my health would change and the pelvic pain I experienced would gradually ease and go away.  All the doctors said it would improve as I got older anyway - how wrong they were!  

Positive change is like a little bit of sunshine - if you can find some small improvement, it helps you to remain patient and optimistic that more positive changes may happen in the near future.

If instead you are seemingly stuck feeling the same way all of the time with no improvement to your physical or mental health, then patience can be harder to maintain.  Your calm and patient self tends to become elusive, and instead you feel constantly irritated, upset, angry and out of control.  I have felt just like this many times during my health and endometriosis journey, and it is a truly awful place to be.  It is so hard to get yourself out of that negative head space as well - people telling you to 'snap out of it' have no idea how it really feels to feel so controlled by your state of mind.

At the moment, I am feeling a bit stuck, because I'm dealing with constant bleeding, intense pain and the need to take regular pain medications (and anyone who knows me well will understand how much I hate taking pain meds!).  I am disappointed to be in so much pain currently, but have to keep my patience and perseverance going, and remind myself that I am only 10 weeks out of major surgery for my endometriosis and that 'good things take time' as the Mainland Cheese TV ad says.  But this time, unlike other dark times in my life, there is an abundance of hope that things will gradually improve.

As my Gynaecologist said to me when I attended my post operative appointment a few weeks back...

                  "All we need now is time and patience".

Is Trouble Brewing?

Now that I've been on the Pill for about 3 months, I have reached the point where it's time to take the placebo (sugar) tablets in the pack for 7 days.  Or, if you're me, throw the sugar pill for that day into the rubbish bin every night, because what's the point of taking them anyway?

Today marks the third day since I came off the active pills, and to be honest, I haven't had a real crash with mountains of pain yet, which is what I was expecting.  I am super nauseous and tired though, and have a feeling of heaviness in my pelvis.

Although the withdrawal bleed I'm supposed to be having hasn't arrived yet, there is definitely a feeling that 'trouble is brewing' in my uterus!  There's nothing I can do about it except to wait and watch and see how things develop.

It's always hard to deal with when you know that things may get worse for some reason.  My motto is 'Prepare for the worst, and hope for the best' in these situations.

I'm safe in the knowledge that if things do turn really bad soon, I've handled it before and I will get through it again! 

This Hagrid quote from the Harry Potter movies helps as well...

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.

Taking the Plunge

Today I made a start on the next phase of my life.

I took the plunge and applied for entry into a distance learning Course through the Open Polytechnic.

It may not be exactly where I would have liked to have been right now, but my Endo journey has complicated life a bit and I haven't been well enough to follow my dreams like I would have if I was well.

That's the thing with chronic illness - all best laid plans can (and usually do) go completely out the window!  I've found that I have had to take some time (in my case a lot of time), step back and take care of my health first.  There's no point in worrying about what you're not doing, because that's not going to help you get to where you want to be.  In fact, it;s probably just going to make you more stressed, and therefore even more unwell, which isn't what any of us spoonies want.

So, now to wait and see if I get accepted onto the Course.  Hopefully I do, because it will give me another focus and be great for my mental health (although maybe a little tricky with brain fog!).

Doing this Course doesn't mean I'm cured by any means.  I am still in pain, and have chronic nausea, chronic fatigue etc.  But I have gotten to a point where I think I am stable enough to tackle this.  If it turns out I'm wrong, then it will just take a little bit more patience and perseverance, but I WILL get there in the end.

Hello little Blog!

I know, I know.  I've been gone from my blog for a while.  I promised myself that this would be a regular thing and I wouldn't abandon it, but it has happened.

Twice as bad because March is Endometriosis Awareness Month and this is my little corner of the internet to try and start a discussion about Endometriosis!

Been off the radar for the last couple of weeks because I've had a really rough time with a massive Endo flare up, which my GP and Gynae have been trying to get under control.  Just been really fun down and exhausted - brain fog doesn't make good blog posts!

Anyway, I'm trying to get back to blogging more regularly and have a few posts coming up, so hopefully I'll be more productive from now.

Hope you're all as well as you can be, or at least not having too bad a day today ☺

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!

                                

Here Comes the Pain again...

I was hoping that I wouldn't have to write this post, but that was probably just wishful thinking on my part.  After starting to make small improvements in my pain and other symptoms, I was very optimistic that I would continue to improve slowly, but it seems that it's not the case.

Feeling like my Endometriosis is waging a war against my body and the medication that I'm on which is supposed to be giving me some relief from my symptoms.

Not much to say today really.  It's just so hard when you begin to see a glimmer of hope and then the door is slammed shut in your face and you feel like you're falling back down the hole again.

                               

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.

Over the Rainbow

Wow!  Today was an amazing day!

Woke up in the morning and actually felt pretty good for a change!

The first day I've felt like the fatigue has actually lifted a bit and I've felt a little more part of the world around me.

It's hard to explain, but it felt like I was more alive and the world seemed brighter somehow.  Felt really energised this morning, then the fatigue started to take over in the afternoon, but not as bad as usual.  Had a pretty good day from a pain point of view as well - yay!

I know that sounds weird, but that's the best way to describe it.  The last day I had when I felt like this was back on the 17th of July, so it's definitely nice to know that my body is still capable of having a 'good' day.

Maybe the contraceptive pill is finally kicking in and settling my Endometriosis down?  I don't know - will have to see what happens in the next few days?  If this feeling continues, it would be the best Christmas present ever!

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. 

Is it all in the Stars?

I'm not usually a girl that reads her horoscope.  Instead I just live my life the best way I can.

However, during my multiple hospital stays this year, lovely visitors brought up a few magazines for me to help pass the time.  It became quite entertaining to read my horoscope and laugh about what I was supposed to be experiencing!

Anyway, a few days ago I came across my November / December horoscope in the Australian Women's Weekly and I was so surprised when I read it that I took a photo to post here.

Maybe it is all in the stars after all. Have a read for yourself...

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 :-)

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!