Update!

I was going to write this as a Facebook status but everyone may not care! Clearly if you have come onto my blog you must somewhat say what I have to say! I haven't updated in a few days, that prank phone call really shook me and made me feel like this blog was nothing and I was annoying people.. But I'm going to update you about my appointment today! (Not too much detail though!)

So today I started off with a photo shoot with girlfriend magazine! So if you're from Australia I'll be in the may issue! A exciting time! I also went and saw the gynecologist today.. Sitting in the waiting room I had a lot of anxiety, my heart was pounding and I was worried about what was going to happen.. would it be like last time? Would I go home wanting to cry?

Basically I came out so much more positive than I have been.. I feel hope for my condition.. Look the prognosis isn't great, but the way I was spoken to about this disease today has made me mentally feel so much better!
so basically we were talking about my endometriosis, we're looking at my vowel and kidney problems I'm having at the moment all being connected! Which would be fantastic but obviously not great! So updating basically; I'm seeing a colorectal surgeon on Monday; this colorectal surgeon will be in on my surgery (when it happens) due to our discussion (I won't bore you with those details!) I am also having a new type of ultrasound on Thursday that is very invasive and will give us a better look into what's going on!
So once I have those things done, I'll be back to the gynecologist and we'll be booking in for surgery!

We also started speaking about fertility, this doctor specializes in endometriosis and fertility, he asked me was I concerned.. I could have said no, but quite frankly I am.. So I had a blood test today for my Anti-Müllerian hormone levels.. So basically (this is from a website!)
Broadly speaking, a woman's ovarian reserve is the amount of good quality eggs remaining in her ovaries. Although men continually produce new sperm, women are born with their lifetime supply of eggs. In other words, women do not produce new eggs and as they age their supply of eggs in their ovaries decreases. As the rate of loss of eggs varies between women, it can be difficult to predict the amount of eggs and level of fertility a woman has as she ages. Therefore, measuring ovarian reserve can be an important part of fertility evaluation..
So basically we need to see how much the endometriosis has effected me..

So basically this is what happened today! I'm very positive yet scared.. The doctor went through photos to explain exactly what he was saying.. It's very confronting..
So I'll keep you all updated! Here's a photo from the shoot from today!

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This blog is meant to be a place of understanding and I will not bow down to the gutless person ringing my phone number and abusing me and calling me a hypercondriac and giving me death threats.
You are gutless.
This is not something I am making up in my head. You have not won..

Grief..

It's such a funny thing, isn't it? Grief.. Now I said that I was going to be 100% honest in this blog, and I feel like every person that is taking the time out of their day is getting to know me through these posts. Now know that I am a huge over thinker..
And I tend to do this at the most inconvient times.
Now please note that it is currently 12:11am and I am one of these moods.. I won't post this until the morning but I'm feeling compelled to let all my feelings out onto this blog at 12:12am.. Damn you over active brain!!

Now back to the subject, part of endometriosis is grief, we all experience it.
We experience it in different ways and for different things, but we have all experienced it..
I'm sitting here and I feel that I should speak about my Nana, I don't know why.it really has nothing to do with our endometriosis subject, but I feel she's telling me to tell my story of grief.. So here it goes..

Ps.. I'm sincerely hoping to go to sleep after this; I've been trying to and my brain keeps saying.. Write the damn blog and then we'll go to sleep!

okay; so basically.. This is going to be hard and emotional for me and any family reading. I was very close to my Nana; I can remember every smell of her house and he warm hugs and her calling me her "darling chicken" this was a bond between us.. I had such a special moment with her after Pa died.. We were in the lounge room looking through his pictures when "Wind benethe my wings came on" that was the first time I had ever seen my Nana cry; and as I hugged her and said everything was alright, i knew nothing would break this.

"Santa" gave us tickets to see Wicked on the 3rd of January 2010, we took Nana along as when she had tickets to see it with my Aunty, she broke her knee and couldn't go.. She sat next to me the whole time and held my hand.. She had a cough but was alright, she wanted to meet Bert Newton (we never did!) but we had a great time.. I was at a sleepover the Wednesday/Thursday and mum asked did I want to come take Nana to the doctors with her.. I said no because I was at the sleepover with friends..
in hein sight, I regret that so much now, that would've been one more chance to see her..
Everything was normal, she was fine..

Sunday the 10th January 2010, I was getting ready for work and dad was mowing the lawn.. Our house phone rang, (it rarely does) and Maddison answered and said that my Aunties husband needed to speak to Dad, I continued on getting ready trying to listen in.. I heard dad say to mum to sit down..
Maddison and I rushed outside and mum said to go away; I remember standing in the bathroom with maddison and hearing mum let out a almost huge wale.. Maddi and I went outside and she told us to sits down..

I remember Mum saying; Nana has had a heart attack.. At this point I was alright, everything was fine. We can fix this.. I then heard the words. "She didn't make it" I don't think I have screamed and cried so much at the same time.. We all sat there hugging and crying.. What could we do?
Mum told us to get ready to go to my aunties.. I can tell you the exact spot that I either fainted or collapsed in, because all I knew was I some how ended up on the floor.. I had never hyperventilated so much.. That moment I prayed. I wanted to wake up. But I didn't.

Now this is a day I can remember every single little detail about; if you have ever lost someone so suddenly you may feel the same. Now don't ask me what any other song has played on what day on the radio. But on our way over "Fireflies" played and I remember this because this one line in the song said I'm weird because I hate goodbyes
That line will always take me back to that day, that moment.
I don't know why I remember that so well.
But I do.

Now because this was so sudden we turned up and police cars were there, it was scary.. I walked past my Nana who hasn't moved from where she has passed, and she looked like she was sleeping..
After the police had left mum and I had some tender moments, we went in and sat on the floor next to Nana.
I don't know what I was thinking.. It was a hard moment, I was holding my dead grandmothers hand and I knew she wasn't coming back..
I prayed and told her I loved her and she was gone..

It has now been three years and I still can't come to terms with this.. I do believe that my Nana is my guardian angel and she sent my Eddy, my protector to look after me once she had left. He arrived 11 months almost to the day, she left.
It is hard to visit her grave, I finally took eddy with me, what do you do there? I always find it a strange sensation that they are under there.. Just not "under there"

I will have dreams with Nana in them, and again it's during times of high stress and I think she's telling me its alright. Like now, I think she's telling me its okay to open up.. I can talk about my grief, I need to be more open and work through it with people who love me. So Nana, if its okay with you.. It is now 12:35am and I would love to go to sleep!
I hope you have all enjoyed (I guess) reading this and you all find comfort..

I'll leave you with a song that eddy sent me the other night in text message (very relevant) and the last photo of Nana and I xx sweet dreams xx

Pain? Again..

Ahh feeling kind of down tonight..
It's generally around this time that I will be over everything and may take it out on anyone around me.. The past couple of nights I have had severe indigestion as well as pain.. So I've been basically throwing up of a night.. This is basically just a post where I just want to winge and be out of pain.

Being at work I cannot sit down constantly and stretch my back, the more severe the pain gets, the more it then goes into my back, so at the end of the night I'm ready to collapse! I'm trying to deal with getting over my meningitis as well at the moment, so on top of the pain, I will generally be really tired no many hours of sleep I will get.. Before returning to work I was sleep 12-15 hours a day and it wasn't because I was lazy, it's because I honesty can't get up..
Saying that; I can't spend all day sleeping so if its a full day, everyone knows I'll be very grumpy by the end..

I'm going to have another winge about my weight situation! I started thinking about this while Edward and I were on our nightly walk.. When I first was put on my medication in April 2011 I was 60kg, I was going through a rough time, but I wouldn't say that I was not eating. We have all noticed that since I've gone on the mediation my weight has gone back up.
I'm surprisingly not eating anything bad! I calorie count everyday to ensure that I'm eating enough for my body and exercise but I can't seem to shift it! I'm blaming the hormones, the pill and my anti depressants! A week excuse I know;
But honestly that's what I think!

So I'm going to hop into my nightly bubble bath and hopefully put the wheat pack and my nightly medication and hopefully will sleep off the pain! Xx

Dreams and letters..

The past couple of posts I've spoken about how I am looking forward to answers when I see my new gynecologist Tuesday week.. I however think my subconscious is very nervous though. Last night I had a dream that I was locked in my previous gynecologist's room and he wouldn't let me out.. As it turns out I'd missed this new appointment

Now I'm a heavy dreamer, I know Edward doesn't dream at all, or sorry, he does but doesn't remember it.. I however remember every detail of a dream which is distressing.. I'm a firm believer that when I'm in high stress my dreams become more vivid and more realistic.. Take the example of when I was experiencing high stress during my bullying case, I'd dream that someone was chasing me around trying to kill me.. He had no face. I spoke to the psychologist and considering that I was loosing everything that I was comfortable with, I was this person with no face.
I have always been interested into looking into dreams. But obviously I must be experiencing high stress with everything that is going on with my life this is translating into my dreams.. Spooky huh! Doesn't anyone else experience this?

Today I'll leave you with a letter written by the endometriosis survivors guide of America! Very relevant! Enjoy xx

The Endometriosis Survivors Letter

Dear Parents, Partners, Friends, Families, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking - again - for your understanding. We are not responsible for failing to live up to your expectations, the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities.
We are not "lazy," we are not "whiners," we do not make the pain up "in our heads."

We have endometriosis.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our every day appearance. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our emotional well- being.

When we call in sick, it's not because we need a mental health day or to "go shopping." It's because we can't get out of bed from the pain. Do you think we like letting our careers suffer? Would it be easier for you to understand if we said we had cancer and looked the part?

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are "flaky women." It is because we are taking drug therapies to stall this incurable disease, or perhaps it's because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.

When we can't have intimate relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.
When you, our parents, can't understand that since you are healthy, we should be too, but aren't - try harder. We don't understand it either. We need your support more than anyone's.

When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us); because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend
enough quality time with our children, or worse - that we might have passed this disease down through our genetics onto our daughters?

When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say.

Don't give up on us now.

As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is "normal for a woman to hurt." Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal - why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? We're not drug seeking; we're answer seeking.
Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with some days. We face a society daily that doesn't even know the word "endometriosis," much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us "it's all in your head", and "have a hysterectomy, it will cure you", or "get pregnant, it will cure you", when we know that it won't and have been dealing with infertility for the last however many years. Can't you see that?

We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves and travel thousands of miles to the rare specialists that are few and far between. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why.

Endometriosis is a disease that affects all of us.

Take the time to learn about it and understand. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, pain-free life. We can have healthy relationships with our loved ones. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again.

Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.
Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it tries like hell to kill our spirit. It tries to kill every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...and we are holding our heads high in spite of endometriosis and fighting it every single day.

We are asking you to take part in that battle and work with us beating it. Wouldn't it be nice to have back the daughter, wife, friend or loved one you once knew?

Think about it.

~The Sentiments of Millions of Endometriosis Survivors Around the World~

Celebrities with endometriosis

Okay! So I have found a list of celebrities that have either spoken out about endometriosis or have reportedly been diagnosed!

This is the list so far I have found! I will continue adding!


Emma Bunton (diagnosed at 25).

Susan Sarandon

Hillary Clinton

Jillian Michaels

And of course, Marilyn Monroe which we now know as well that her death may have been contributed to her addiction of pain killers from this disease..

Myths and Misconceptions of Endometriosis..

So I have spoken before about the misleading information that is out there for the public about endometriosis, heck I've even been told a few myself..
We can relate this back to the fact that there hasn't been enough research into this disease to support facts. I myself find it also hard to believe that male gynecologists can understand the pain. That may sound harsh and I'm sure they do a fantastic job, but they don't understand the pain..
I bought this up after an article I saw on twitter last night was posted.. There were misconceptions in the article that I saw a lot of women up in arms. We need facts and every article that is posted needs to have correct information, you don't see articles about cancer with misleading facts.. We need all the correct facts, I'll be bringing up the probably most common misconceptions and facts about endometriosis.. Feel free to comment if I missed anything!

Period pain is normal
Attitudes towards this also taboo subject of a women's menstrual cycle have changed over time.. Severe period pain that keeps us women from going about our day to day activities is not normal.. This is what alerted me to the fact thy I had a problem (at this time it was not located in pelvic area) this pain was excruciating.. I was in so much pain at school that I would be going to the bathroom every class.. I was embarrassed.. I didn't want people judging me, but it hurt so much. If period pain is affecting your everyday life then you should get it checked out. So many women have no idea that they have endometriosis.. I now know that the pain was not normal! This pain now effects me and millions of other women everyday. We can't go about our day to day tasks. I know personally that if I stand or sit for too long I have a lot of pain, at this point to pain killers will help. This has also affects my sleep and relationship.. Luckily I do have someone who is amazing that will look after me.. I have heard that plenty of women have had relationships end because of the toll it has taken on the relation.. I understand that it's difficult for partners to understand, but they need to be educated to help their girlfriends through the difficult times!

no-one is too young for endometriosis
It has only been recently that more and more teenagers are being diagnosed with endometriosis, I myself was obviously diagnosed at 16.
The diagnosis is sometimes only found when women are trying to conceive a child and can't.. It is thought that endometriosis does start in your teens but women wait till their 20's and 30's to be diagnosed. As said in the previous post, this is not normal. I have read that the earlier you start your menstrual cycle the higher chance you have of developing endometriosis..
Now I don't know if this is true, but sayings this, I had my first menstrual cycle in 2004 when I was in year 4.. I was 9 or 10 I believe..

Pregnancy cures endometriosis
Now I have been told that if I became pregnant that my endometriosis will magically disappear, now we didn't go into this subject.. But correct me if I'm wrong.. Is it because you don't have a period for 9 months? If this is why women are being told to become pregnant then we can say that this is 100% false! I haven't had a period in almost 9 months and my endometriosis has grown without being fed, now with saying that I could e wrong! I myself may have that fact wrong.. Another may be the pregnancy hormones help surpass periods.. I don't know.. But we can confirm this is false!

Hysterectomy cures endometriosis
Now we are seeing that endometriosis just doesn't occur on your uterus, Ect.. It has been found on the lungs, brain and other tissue you wouldn't expect! Now I have also been told that a hysterectomy may be my only other option.. I have spoken to so many women on twitter that have gold me that after so many years of enduring the pain they have just eliminated the problem. Unless the tissue surrounding the area is completely clear, endometriosis will come back!

Now it was the article on twitter that got me started last night, there needs to be more understanding and any "false" articles need to be removed. I am hoping that one day there is a cure for this horrible disease. I don't want anyone to keep going through this..
It upsets me that I am on so much medication to help stop this disease but its not helping.. Without the women thy I speak to on a daily basis about this disease we wouldn't be getting our message out there.. It's time to start getting the facts about this disease that is ruining my life and million of other women's lives out there! So if you have any questions please don't hesitate to ask!