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!

Infertility..

Today I'm going to be 100% open in this blog, I'm opening up with my fears for the future.. Please keep in mind these are 100% my thoughts and this is a space for learning about the disease and how I am dealing with it..

So today I am talking about the possibility of being infertile.. I have not being told that my chance of children has been robbed but there are millions of women who are infertile due to this disease. This is like PCOS where you may not have children. Now there are also plenty of women that I have read that have had beautiful children and this is why one of the "cures" for endo is pregnancy.. This is currently not a option. I am 18 at the end of the day.. I need to live my life but I do everyday worry that I will never have that chance.. I shouldn't be worrying at my age about having children, but due to the severity of my endo I worry that I will be unlucky and not have this blessing.. Now these are 100% my feelings.. I am with someone wonderful that I plan on spending the rest of my life with and having children.. But what if this isn't a option? I want to have children to have something to work for..

Saying that I was told by a woman who read my hand said i would have four children.. Now if my endo continues to be like this I may choose to have a hysterectomy which will eliminate everything.. So that will not be a option to have children after that.. Do we adopt? surrogacy? These are all things that I probably shouldn't be worrying about at 18! Lets see what the future has in hold..
Will I have money to afford IVF if I can't have children?

Any women that have been through endo.. Have you had children? Was it hard? Let me know!

Meningitis..

So amongst all my other problems, during October 2012 I came down with the sometimes fatal infection of meningitis.. On the Monday Edward and I had gone to the city and I noticed that I was more sore than usual bit out that down to walking around, bad shoes..? The Wednesday night I was driving home from Edwards house and I remember thinking that I was coming down with something.. My throat was sore, I felt feverish.. So I went home took some panadol and went to sleep it off.. That Thursday morning I felt like absolute shit.. I have never felt so sick in my entire life.. I was drowsy.. I couldn't awaken.. Edward said have some breakfast and I'm sure you'll start to feel better! I went out and tried to eat and bowl of oats and dried reaches as soon as I put it in my mouth.. But body would not have it.. That's when I knew I was sick.. I always eat! I rang the doctor instinctively and made an appointment for about 4:40, I thought if I was coming down with something I may as well get onto it straight away!!

Mum kept trying to keep me awake but I kept collapsing out of tiredness... I want and had a shower and washed my hair to look some more human like! It was so hard to move, I could barley stand and every movement took my breath away.. Something was wrong.. By the time we got into the car, I couldn't see properly and light was hurting my eyes.. No it was killing my eyes.. I was hallucinating and throwing up all the way down.. Mum finally asked if my neck was sore.. It was.. She knew straight away what was wrong.. (Dad had bacterial meningitis in 2003, we'd been through this!)

I seemed to wait for what seemed like forever.. I was throwing up.. I wasn't comfortable.. Mum went outside to phone dad and Edward.. She knew I would be going to emergency.. I finally went in and he took one look at me and said.. Shw shouldn't be here.. She should be at emergency.. He did all the tests for meningitis.. I couldn't move my neck one bit and I had a rash developing...
This either ment is was menigercocol or meningitis.. I have never seen Edward move from work so quickly, he must've run! We got into the car and headed for the emergency..

Meningitis will be generally fatal if you don't move quickly.. The staff had me in record time, this would've been so I didn't die!! I had a bed and we turned all the lights out.. I was very, very scared at this point.. A lumbar puncture was ordered. Basically a lumbar puncture is where a big long needle is inserted in to the middle of the back between the discs to extract spinal fluid.. It hurt.. I was admitted for the next week...

I was during this time given a hell of a lot of antibiotics.. Injections everyday and I discovered I have a vitamin b-12 deficiency! Yay another thing to add to my list!! I was put in the stroke unit to ensure that my brain was being looked after :-) although I was with older people, I was scared..

Fast forward to now and I was a lucky girl, I didn't loose any limbs.. I amongst other things will still suffer debilitating headaches everyday and photo sensitivity.. The reason this is so deadly is because its an infection in the brain.. Now many people die from this because you feel like you just have the flu.. If I had left it another day.. I possibly would have die.. I'm not sugar coating this. Most people will die from this infection.. I was very lucky..
I do however suffer chronic fatigue from my poor body being through so much and I only last Sunday went back to work after being on sick leave from November 16. It's currently a huge struggle and I'm so exhausted..
But I needed it.. So please get meningitis checked out.. It will be fatal if you don't!

Treatments/Alternative Therapy!

So today I'm basically going to talk about the treatments, medications ect which I believe may help!

The pain which I have everyday is unbearable and I honestly will try anything to help take the pain away.. Of a night when I'm honestly over the pain I generally will have a bath.. I have found that Radox muscle Sooth is an absolutely excellent buy! I will put about two lid fills into a nice warm bath and viola! Bubbles = relaxed Adrienne! Honestly this does help the pain so much! It may be because I am in such a relaxed state, but at the end of the day I'm willing to do anything! On top of this I also use Radox muscle sooth body wash, this does help relax every muscle in the body and I love the sent! They do have bath salts available
but this does not give you a bubble bath! A hard day with pain definitely needs a bubble bath!

I am also a huge believer in yoga at the moment, going through Pinterest you so find a lot of stretches that help with pelvic and back pain (due to where the endometriosis is, this will transfer into my back) if I can you will generally find me on the floor stretching when I'm in the most pain.. I also have a pelvic floor cd which is meant to relax your pelvic muscle and strengthen to relieve pain.. This is a bit of an odd cd.. I tend to listen to this alone.. She likes to mention your female area being like a elevator.. Yeah well..

So basically that's the alternative side of things.. I am currently on medication to help stop the endometriosis from growing.. Generally speaking endometriosis will only grow when you have a menstrual cycle.. But of course you have that small percentage of women that will have it grow anyway! (Yep me!!!)I have not had a menstrual cycle for 6 or 7 months now, and this was to stop the pain and slow the process of growth..
No luck! This does make me worry about how it's affecting my body and this is of course not a normal process for my body.. So I take the pill everyday and skip the sugar pills every month.. I'm also on a hormone tablet called Ralovera.. This is meant to put more "male hormones" (I hate using that term!!! Eddy asked the doctor is I was going to start growing a beard -.- thanks dear!!) this again is meant to stop the growth of the hormones that help the endometriosis..

We can all clearly see that this is not working! So last resort is my strong prescription pain killers which I go through over 40 a week.. That's a lot.. Again I'm scared what this is doing to my body? Is it damaging my liver? And I'm becoming addicted? Do they even work anymore?? It scares me..

Currently I'm also undertaking a sort of relaxed gluten free diet. As humans we don't always digest wheat or gluten very well.. So the doctor and I believe that maybe this is what my pain could be? The one things that I am completely going gluten/wheat free are bread and pasta! If you have me on Facebook you saw my status that I was finally able to eat my mums spaghetti with gluten free pasta without being sick for the first time! The bread is pretty good as well! Those seem to be helping! I see the gastro-intestinal specialist on the 28th and it will probably be time for a colonoscopy.. I am keeping in mind that my endometriosis may be covering my bowel and that this colonoscopy may just be a pain in my ass... (Hahahaha get it???)
But hey! I'll probably be due for more surgery after that! I am scared for my next surgery.. But that's my next blog!! Xx

New Gynecologist!!!!

So yesterday was another trip to the doctors! This can be a weekly thing or if I'm lucky maybe two weekly thing! So I got sick in November actually over the last 2 years I have become increasingly sick.. If its not one thing, it's another.. Actually my doctor said in October we weren't going to see each other once a week anymore, we were going to try and see how I went.. But in adrienne style.. I came down with meningitis! So it was back to weekly appointment until he left me for 6 weeks! (I admit he does need a break) but boy I must've bombarded him when he came back!

Now my previous gynecologist I haven't seen since after my last surgery in August which is disappointing, my endo has come back so quickly that I need someone to help me! So as said in my previous post I was looking for a new gynecologist! I had someone in mind (who actually when I messaged Mum the name, she informed me that it was the day of one of my little sisters friends...) so Mum came in with me to the doctor and we bought up how disappointed we were.. Now my doctor has already been told what the previous gynecologist has said "it doesn't come back that quickly" "it's not that severe" Ect.. He laughed and said its completely different to what the gynecologist has out in his letter explaining his findings during my operations.. As it turns out, my endometriosis is stage 5 which is the last and most severe stage.. Now we don't know why he is saying one thing to mum and I and another in the letter (could be to stop me from going neurotic?! - by the way, that hasn't helped!!)

So with that information I told my doctor the name of this gynecologist I had in mind.. He did inform me that he was basically the same as my previous one.. So I'd be back at square one! He went through his list and I have now been referred to Geoffrey Reid who is world known and only specializes in endometriosis and fertility! Yay! He has been finding endometriosis for over 20 years and only deals with severe cases.. I had actually read about him in many findings, so presently I'm satisfied!

So this is my next step! I'm seeing him on the 26th of February and then I see my gastro-intestinal specialist on the 28th!
So I'm feeling positive!

I'll post his website for any of you that want to check him out!

http://www.gdreid.com.au/

What is this condition?

Okay; so basically some of you are probably even wondering what the hell I talk about when I speak about endometriosis.. It unfortunately is a very painful condition that only 1 in about 10 women will experience in their lifetime.. So of course amongst other things, I am that lucky one!! What has started off as "painful cramps" has turned into a everyday struggle.. In true Le-Guier style (we have to go the full way!) I am of course that lucky lady who's endo has returned in record time.. I do have some blissful relief for a few months once I have undergone an operation to remove it. During that time I am generally pain free and very happy! Now for some ladies, one this has been removed the endo will not come back to attack for a few years (if they're lucky!) but for me.. I have at most only have 3 months relief..I'm feeling like this blog is now a way to raise awareness, unless you have been through this condition you have no idea the amount of pain I can/will be in on a daily biases. It is alot more than painful cramps.. Its very hard to explain this to someone who has no idea what is going on because as usual, I do not look sick, this is a chronic condition that I can only feel, I will never look sick due to this condition and that can be the hardest bit. People expect you to be 100% when most of the time i'll only be maybe 10%. Its very easy for me to wake up in chronic pain to the point where I will just lay and rock myself to sleep crying with a wheat pack, I will take more than the recommended dose of pain killers.. I just need relief.. Its very frustrating being me, I understand that people are a lot worse of than I am, but when that pain kicks in.. Its hard to feel sorry for no one else!Currently there is no cure for endometriosis.. I have been told that
a)falling pregnant
or
b)having a hysterectomy, will cure my condition but due to the extensive amount of research I have put upon myself to find answers, it can not be cured.. Surgery is of course currently the only way to have some "relief" I have been put on hormone pills and have been on the active pill for over 7 months now (not menstruating) and its still growing at a rapid pace.. We need awareness and i want a cure! So sit back and have a read of what the symptoms of endometriosis are and exactly what it is!



What is Endometriosis?

Endometriosis is a condition whereby the lining of the womb (endometrium) grows outside the womb into other organs e.g. the ovary, tubes, bowel and bladder etc. The endometrium is usually shed every month during menstruation if the woman is not pregnant. The endometrium responds to hormones from the ovary i.e. oestrogen and progesterone, which regulate endometrial growth and shedding. In endometriosis these endometrial cells grow outside the uterus and respond to the same ovarian hormones that control normal endometrial growth. This leads to internal bleeding, chocolate cysts (haemorrhage into the ovary) and inflammation causing pain and eventually scar tissue (adhesions).


Endometriosis affects up to 10% of Australian women of reproductive age and may be found in up to 25-40% of women who complain of pelvic pain or infertility (difficulty falling pregnant)

What symptoms and problems does endometriosis cause?
Bleeding internally into the pelvis and abdominal cavity leads to inflammation and scar tissue formation. Women who suffer from endometriosis may complain of the following symptoms:

• Severe period pains (dysmenorrhoea). Although many women do complain of mild period pains, it is not normal to suffer from severe period pains which are incapacitating. Often severe dysmenorrhoea is related to endometriosis.
• Pelvic pain. Endometriosis not only leads to period pains, but may cause pain in the abdomen and pelvis during other times of the menstrual cycle.
• Pain during sex (dyspareunia). If endometriosis grows near the top of the vagina and around the neck of the womb (utero-sacral ligaments) this can cause extreme tenderness, especially when touched as occurs during sexual intercourse.
• Pain on opening your bowels (dyschezia). Endometriosis can affect the bowel (rectum) and the area between the rectum and posterior vagin (typically in the are called, the Pouch of Douglas). This can lead to pain every time you open your bowels. This is especially exacerbated around the time of your periods.

So as you can see.. This is a very complicated condition which 176 million women suffer every day! Bellow one photo is quite graphic (be warned!) this is endometriosis stage four I believe and this is what they will remove during surgery.. Yes that liquid causes a lot of pain! The second photo is all the spots of which endo can occur!

New Gynecologist??

So I have been seeing my current gynecologist for the last two years.. But to be honest, I'm not 100% happy... He doubted me when I went to see him about my endometriosis.. My pain wasn't in the "right area" this has made me doubt my condition the whole time.. Is it in my head? Am I being a hypochondriac? All these questions run through my mind.. I know how much pain I am in.. And I'm letting a doctor let me doubt that? He finally agreed to take me in and as it turns out.. Stage four endo.. Follow up appointment he said I'd never suffer again.. Perfect! Viola! Two months later my pain returned.. Another trip to him was in order.. Another oh it hasn't come back that fast! We should leave it?? (Now I'm sorry most of you have no idea what this pain is like) I couldn't leave it.. This takes over my life everyday.. I'm on pain killers.. Strong ones! It was back again too quickly! Endo doesn't come back remember??? Que. self doubt!
He finally agreed to take me in! You think I'd be happy! Nope! Final words before my surgery? "Now I doubt we'll find anything again.. It's too soon!"

Turns out stage four endo! Again I'm back at stage one.. I'm at my wits end to have some sort of relief.. Comfort.. Anything? I'm finally taking things into my own hands.. I want a new gynecologist.. So I think I have found one.. He seems to specialize in this alone! Woohoo! Now to convince my doctor it's the right decision..

Last four year review!

I started my endometriosis journey when I was fourteen; I was loosing weight and always in chronic stomach pain. With saying this; the pain was not located in the "normal" place you would find endometriosis.. We gave up looking for any hope until April 2011 (I was 17 that year) I ended up leaving my high school due to a severe bullying case. The doctors believed that this pain was possibly due to stress. He did send me to a gastro/intestinal specialist who did mention endometriosis but again due to the pain not being in a "normal place" he put me in for a colonoscopy and endoscopy for the bowel which resulted in nothing being found.. This all resulted in me also being diagnosed with depression. I was living being bullied and in this chronic pain that no one could explain.

Finally a couple of months later my partner convinced me to go back after I experienced an unusual pain in the lower abdomen; my doctor then suggested that a trip to the gynecologist was needed.. I was put in for a laparoscopy in August 2011 and was diagnosed with stage four endometriosis. I went back to the gynecologist who told me it would never ever attack me again..

In January 2012, the pain started again, neither the doctor or gynecologist believed that it could be back so quickly, they kept putting the operation off.. Until I was pestering them so much they put me back in May 2012, less that 12 months later. Yes it was back and yes It was stage four again... I felt like I had been cheated, the gynecologist has said that he no longer wants to operate on me due to how quickly it keeps coming back..

Fast forward to this year, I'm starting to feel the pain in my lower abdomen and back again; I have also been dealing with meningitis.. I haven't been to work in 6 weeks and I'm not sure when I'm due back.. This has definitely affected my life, I may never get rid of the chronic disease, but I truly hope my chance to have children hasn't been robbed..

Feel free to follow my journey of Instagram
- enneirdaeeram