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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Being My Own Cheerleader

I know the title sounds cheesy, but that exact phrase was what sparked the idea for this post really, so I'm stuck with it!

Before your imagination starts running wild, no I have not joined a group that wears short skirts and waves pompoms in the air while chanting slogans for football teams!

The word cheerleader applies to chronic illness in my mind as a way to describe supporting yourself.  To cheer yourself on and be a strength that you can draw on when you need it most.

In the 2 and a bit years since my Endometriosis diagnosis, I have ended up with an unusual kind of team on my side, which is made up of immediate family, a few close friends, doctors, other medical practitioners etc. 

But although I have my 'team' around me, I have learnt that you can't survive the day to day chronic illness life by solely relying on your team mates.  Sometimes they get tired, burnt out or just let you down when you least expect it. 

So, although the team is an important part of your support network, a lot of the strength and will to carry on has to come from within. 

It has to come from you.

Believe me, some days it feels almost impossible to carry on, and you feel like there is absolutely nothing left in the tank.  This feeling of being down and hopeless can last anything from a few hours to many days in a row.  It's so important to let yourself have some down time, because it is exhausting being your own cheerleader and always willing yourself to carry on.  Don't let your brain tell you that you are weak for shedding a few tears, or having a day where you just need some time alone to process things.  It's completely natural, because let's face it, no one can be happy and brave all of the time!

But it is also important to reboot.  To use that inner strength and courage to bring yourself out of a dark patch.  To see the light again and bring that positivity that lies inside all of us to the surface, even if it feels like it is buried deep within you.

Today may be a bad day, a hard day, an impossible day...

But tomorrow is a whole lot of new, a clean slate full of possibilities.  So dig out that inner cheerleader and help yourself through whatever is going on in life right now.  Once you see the light again and realise that what you do have is precious, you will feel more positive and the burden that you carry every day will feel a little bit lighter.

How Do I Take Care of my GP?

This is a question I thought I would never have to ask myself!  Mind you, there are a lot of things I thought I would never have to endure or even think about, and a lot of those things have happened anyway, so I guess this weird thought should come as no surprise...

I have an ongoing issue with General Practitioners.  It sounds terrible to say, but I've been through a couple of different ones since my diagnosis just over two years ago, although I have been with the same one for over a year now.

The issue is that, for the first little while, they seem really caring, helpful and proactive in helping me with all of my 'complex' health issues.  They suggest things to try, and do their best to help me cope and obtain treatments or diagnostic procedures to try and figure things out.

But after a while, they seem to tire of me and become flippant, frustrated and not so helpful.  There are no more things to suggest (unless I suggest options myself and ask their opinion), and no more medications or interventions to try.  They start to tease me when I arrive with new symptoms, or when I dare to ask questions or share how I'm feeling in the hope of finding a little compassion, sympathy or support.

This quote from a blog post of a chronic illness patient really brought it home for me...

Once you reach a certain number of diagnoses, it's like they check out.  I can feel it.  When they see me coming, they begin to put off a vibe of annoyance and distrust.  It's heartbreaking.  I need them.  I need to be given a fair shot.  But they don't want to deal with me.  I'm too complicated.

To look at it from a GP's point of view, I can understand their frustration to a point.  I understand that it hurts them to know that they can't 'fix' me, and that they might even send me away following my appointment without being able to do anything directly to help with whatever I am dealing with at that time.  Here is a good blog post about working with chronic illness patients that has been written by a Doctor -

http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

But I'm not just there for a new prescription or in the hope that there is some new 'magic bullet' that will fix all of my problems.  I'm not that naive.  Being on the chronic illness road for over 2 years means that I have learnt a lot of things, including that there is no cure (and there won't be one in the near future either) for any of the health conditions that I am dealing with.

Sometimes I just want them to reach over, hold my hand and tell me 'That really is no fun, and I'm here for you.  How about we do some blood tests to see what your so and so levels are like?'  Or perhaps suggest what topics are most important for me to discuss with my Specialist next time I see her?

It isn't all about pulling out your prescription pad and giving us more medications.  It's about compassion, and that is what I think is most lacking a lot of the time at my appointments.  It is just a small thing to reach out to a patient and let them know that you acknowledge what they're going through is tough and that you are here to support them, but it can make all the difference to someone who is travelling a long road through chronic illness.

I often feel left adrift and on my own between appointments with the Specialist who is managing my health conditions, so support from my GP is paramount on a day to day basis to help us get through.

So to my GP, as well as trying to take care of myself, I will try to take care of you so that you don't get burnt out and dread seeing my name on your patient list.  But the effort goes both ways, so please try to take care of me too, and support me when I need it most.

Thank you.

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...

Bladder Nightmares!

Tonight I really thought I was going into urinary retention, also known as not being able to empty my bladder.

I've got ongoing bladder issues at the moment.  It's a long story, but I've had issues on and off all of last year, and a bit the year before as well.  It started out as just a couple of days of frequency and urgency issues every couple of weeks, which I put down to Endo and having had 3 surgeries in 2014.  Everything in your pelvic cavity is so close together, that it didn't surprise me that I may have developed a bit of an iffy bladder as an unfortunate side effect of all that surgery.

In October 2015, things began to noticeably worsen and by December I was experiencing bladder problems for 2 to 3 days out of every week.  My Gynae was concerned that the ongoing fatigue and bladder issues I was experiencing may be signs of pre-diabetes when I went back to see her, so she set me up testing my blood glucose levels for 3 months until my next appointment.

Enter the New Year and the beginning of 2016, and my bladder has continued to deteriorate.  Now, every single day since January 1st has involved full time bladder problems and pain, and not to go into too much detail, but I'm using the bathroom 15 to 20 times a day now!  Let's just say that I'm thinking about redecorating my bathroom, since I seem to visit it so often these days!

Today had been yet another very busy day for my bladder, but I noticed a change tonight, whereby when I tried to empty my bladder (which felt full), not much at all was coming out.  This might not seem very scary to the average person, but to me it started to ring alarm bells considering my 'normal' volumes at the moment are much higher than that. 

Didn't think too much of it until it had been happening for a few hours, and I was lying in bed when it hit me.  That this was exactly what happened when I went into urinary retention for the first time back in early 2014.  That was a seriously scary experience, even more so than Endo pain, because having absolutely no control over such a basic and vital bodily function does really make you panic.

So for the last 30 minutes, I've been pacing the hallway in the dark with my earbuds in, trying not to freak out and hoping that gravity would help sort my bladder out!

Luckily just now, my bladder has decided to behave and normal(ish) service has resumed for now.  Phew!

Leaving my bladder in such an over-active state does concern me, especially because my next Gynae appointment isn't for another 5 weeks.  I've tried to bring it forward, but it's just not possible this time around (the joys of being in the public health system).

I would hate to think that I may be developing permanent, irreversible damage to my bladder while I wait for my appointment, but I'm crossing my fingers and toes that this isn't the case!

Bladder, just hold on and don't play any more tricks on me please!  Don't think my nerves can stand it!

A Letter to My Gynaecologist

Dear Dr V,

You'll probably never read this, and I don't think I'd ever get up the courage to send it to you anyway!  But it's 2 years to the day that I first met you,  and I've been reflecting on my Endo journey, so I wanted to write a little something to you, because you've been such an important part of my life over the past 2 years.

I guess you could call it an ode or tribute to you, but this is my blog and I think both those words sound ridiculous, so I think I'll just call it a letter of thanks and leave it at that!

The first day I met you was a Friday in January 2014, the day after my diagnostic laparoscopy.  The Registrar who was looking after me saw me gingerly walking down the hallway in my hospital gown, and brought me over to you to introduce us, because I was being referred to your list for my upcoming surgery to remove the Endo lesions seen at surgery the previous day.  

There I was in my hospital gown, and then you turned around from the group of doctors you were with and there was this lovely friendly but slightly serious face looking back at me.  You said "Hello, hello, nice to meet you" and then you were off down the hallway to see your next patient.  I remember that day you were wearing a navy blue skirt suit, which I liked to refer to as your 'power suit', and honestly I was a bit intimidated by you!  But that was 2 years ago, and basically the whole thought of having a Gynaecological problem was pretty scary!

That day I was pretty freaked out with lots of thoughts going round in my mind, including how much pain I was in, the fact that I had Endo and needed more surgery.  It was all a big shock to my system, and which Gynaecologist I would have looking after me hadn't really crossed my mind yet! 

As 2014 wore on and the admissions to and nights in hospital piled up, I felt like I got to know you a little more.  You would always come to see me each day when you could, and were happy to take a moment to answer any questions I had.  

Even though you probably always had other places you needed to be, you always made time to come to my cubicle in the mornings and explain what tests were being done or what was happening that day.  Sometimes you would even do my blood tests or put an IV line in while you were there, and you were the best at doing that!! 

Some days you would even sneak into my cubicle in the afternoon before you left for the day.  You'd pop your head around my curtain, drop your bag and perch on the windowsill in the late afternoon sunshine, to have a chat with my parents and I and update us on any results or plans for the following day. 

If I'd had a bad night and was in a lot of pain, seeing your shoes appear underneath my cubicle curtain or hearing your voice float down the Ward hallway in the mornings was all I needed to know that everything was going to be all right because you were here now.  

One time I was in hospital yet again, one of the House Officers caught me in the patient kitchen and thought I was visiting someone. She was dismayed to hear I was back on the Ward again, but shared something about you with me that definitely lifted my spirits! She said that you got all the tricky cases, and that if anyone could get me sorted out, it was you. Those words gave me even more confidence and faith in you, and helped me carry on. 

When I graduated from being an Inpatient to being an Outpatient and seeing you in Clinic as opposed to on the Ward, you were still very supportive of me, even if you were running really late some days!  But I like to think that you running late is a sign that you take excellent care of everyone else just like you do of me. 

When I try to thank you for your care sometimes, you tell me that you're just doing your job, but to me it's so much more than that. Even though I'm sure you have lots of other patients to care for while you're looking after me, you make me feel like I'm really important when I come to see you, which I'm sure is hard when you're so flat out busy all the time. 

Sure, we've had our disagreements over the past 2 years, and you've had your bossy moments when you've told me to stop Googling my symptoms (I have, by the way!), or told me I shouldn't worry so much or take things so seriously.  But these moments pass, and after 2 years we're still together, so that must mean we make a good team, right? 

And then there have been the emotional moments we've shared... 

The laughter and smiles when sharing a joke or funny story at the end of an appointment.  

The tears have flowed as well since I've known you, because sometimes the pain, symptoms or just general uncertainty on my part get too much to bear.  I remember one time I started to cry in your office and just couldn't stop, so you got up out of your chair, took me in your arms and just held me tightly, stroked my hair and told me it was ok and helped me to calm down. I don't think I could have cried that day with any other Doctor present, but there's something about you that just makes me feel safe. 

Sometimes I think my complex issues have probably given you a few grey hairs, and I hope that having me as a patient hasn't caused you too much stress!  Hopefully my kind nature and winning personality make up for that! 

I can't begin to tell you how much I appreciate everything you've done for me in these past 2 years. Maybe I'm still not in the best of health yet, but the fact that you've stuck by me and haven't given up on me means so much.  Each time I come to see you, you've been thinking about me and you always have some new idea, test or treatment for me to try, and that's all I can hope for and more.  

Thank you Dr V, from the bottom of my heart.  I'm so glad I ended up with you!

P.S.  I saw this quote online, and somehow it made me think of you, because you have definitely helped make me feel alive and positive, so that I can continue to carry on during my Endo journey...

N.B.  Names have been changed to protect the identity of those mentioned in this post.

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.

So, How Are You Doing?

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

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

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

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

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

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

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

My Wish

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I've Done it Again!

Just to let you know that I'm still here.  My mind has just been on other things lately, and I haven't felt the need to blog as much.

But I promise that I have a whole lot of half written posts coming to this blog soon, so keep an eye out and soon my words will fill this page again.

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.

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 ☺

Adhesive Adhesions

Adhesions is a topic that is not always associated with Endometriosis directly.  It's mostly described as something you develop following surgery.

However, adhesions are related to Endo and I will try to explain how below...

As you probably know, Endometriosis creates lesions inside your body, usually your pelvic cavity, that bleed and cause pain. 

One way that your body tries to heal from these lesions is to do what it usually does as part of the healing process when your body has sustained some kind of trauma - create scar tissue or adhesions.

Adhesions can also be produced by the body as part of the healing process following surgery, for example a laparoscopy in the case of Endo treatment.

So there you go!  A short explanation of  Adhesions and their relationship to Endometriosis.

Hopeful and Cruel

Here I am - back to square one again.

Endometriosis is a bit like that.  You start on a new treatment or medication, and you're filled with hope that it will do what the Doctors tell you that it will do.

The first week or two is usually a bit rough as your body adjusts to it, and your hormone levels can be a bit upside down.

When things start to even out after a couple of weeks and you begin to see a positive change, you feel so excited and hopeful that this one just might be it.  That this might just be the thing that eases the pain and symptoms and helps you get your life back a little.

And then it starts.  The downhill slide.

The pain and symptoms start to return, and you feel so tired and ill.  You begin to question why nothing works.  Why it either doesn't work at all, or even worse it gives you some relief and just when you begin to hope, it all comes crashing down again.

At the end of the day, it all comes as part and parcel of having a chronic illness unfortunately.  Some things work and others don't, and you just have to ride the wave until the sea calms and it all begins to even out again.

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.  :-)

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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!

                           

Retail Therapy

When you have a long term chronic illness, sometimes it feels like there is no light at the end of the tunnel.  I have days where I feel like I'm imprisoned inside this broken body and there's nothing I can do about it.

Today, I was in a considerable amount of pain.  I haven't yet decided whether I was being brave or stupid, but I packed my handbag with snacks and pain killers and went off for a little retail therapy.

I don't treat myself very often, but occasionally I realise just how much I've put up with over the last 15 months.  So today I decided it was a treat day.

My energy levels (or lack thereof) mean that I can only really manage going to one shop, but one shop was all I needed.

Smoove Reworked Vintage is an absolute gem of a store and if you haven't been, you really should.  They were in little High Street but are moving to Ponsonby over the next couple of weeks.

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!

                                

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.

Side Effects and their effect on me

I'm on a tablet to help me sleep at night, since I haven't had a decent natural nights sleep since December 2013.

Printed on the box label, it says to "protect yourself from too much sunlight."  I have fair skin anyway, but I have been extra careful to not be in  the sun too much because of the warning on the box.

Today, I walked from the car to our local shops and was maybe in the sun for a total of 10 minutes and this happened!

Oh joy, the side effects of medications can be really annoying sometimes 😕