Friday, July 26, 2013

Poppin pills!

I know people who have not even had a Panadol in years because they don’t believe in medications to take away pain. I do. I am currently taking three different pills a day as part of the treatments they think will help with my pain (plus an optional pill for really 9 out of 10 pain) and there is times, where I will take up to 8 or 10 nurofen plus on top of this a day.. 

I carry a little medications purse on me at all times (this being my very gorgeous guess makeup bag!) I am reassured by having them with me, just in case. In case the pain really kicks in, in case I end up somewhere else when I have to take my medication or in case the world suddenly runs short of my medication.

I am so conscientious about keeping plenty of them on hand that I think my pharmacist is suspicious of the amount of prescriptions I put through him.. I almost go into my chemist every day, they do know me by medication and name. They did use to know mum and I because of the medication dad was on, but now I am the one who has taken over.. We did reach the safety net already this year where we get our scripts for that little bit cheaper which is a god send!

Thursday brings my appointment with the rheumatoid arthritist specialist.. Lets see how that goes!! 


Saturday, April 6, 2013

Ureteral Endometriosis?

I have been quite lazy writing in my blog as of late, I was basically waiting for my all important appointment with my endometriosis specialist which was yesterday! I'm feeling very run down at the moment, not sure if i've caught something, but I havent quite been feeling myself the past few days and today I feel quite crap! Almost tempted to go to bed very early! Unlike me! My body is clearly over everything!

So the specialist appointment went quite well, I was more at ease this time because I knew exactly what I was in for! Now the specialist believes quite strongly that I have Ureteral Endometriosis.
I had not looked into this form of endometriosis before! Obviously I have spoken about the "normal" spots for endometriosis, but this then through me into new types of research! So we do basically have an answer for the kidney pain! This is what i want! Answers! We don't believe that I will need a bowel resection during my next procedure, but my colorectal surgeon has been now booked in to be with all the specialists and doctors during my surgery just in case!

So after being showen photos during my appointment yesterday I did still walk out a bit confused as to what Ureteral endometriosis is??
So I've done some research and this is what I've found!

Ureteral endometriosis is a rare form of endometriosis.
Diagnosis is an important factor in ureteral endometriosis. This form of endometriosis is an additional complication of endometriosis where an obstruction in the ureter can lead to renal failure when undetected. Its asymptomatic nature makes it very dangerous and for any woman complaining of pelvic pain, this diagnosis should not be ruled out without thorough and complete tests.

Ureteral endometriosis occurs because of a physical obstruction. This obstruction can be an endometriotic implant. Its ‘silent’ nature means that it often goes undiagnosed and by the time a definite diagnosis is made, the condition has progressed to where the affected kidney needs to be removed. Usually, the obstruction appears on distal segment of the left ureter which in turn compresses the female reproductive organs.Ureteral endometriosis has two variants – intrinsic and extrinsic. Eighty percent of the cases tend to be intrinsic endometriosis. A combined version of intrinsic and extrinsic ureteral endometriosis can occur as well. Scans help determine the obstruction but a physical examination does not usually yield a positive result. Intravenous pyelogram (IVP) is the ideal test for intrinsic ureteral endometriosis. It can even provide information on the degree of renal damage and extent of obstruction in the ureter. A CT scan is used for the diagnosis for intrinsic ureteral endometriosis.


Symptoms The degree of symptoms will depend on where the obstruction is and how large the obstruction is.
Pain in the flanks and back
Pain during periods
Pain while having sex
Perpetual discomfort in the pelvic region
Hematuria or blood in urine
Excessive bleeding especially during menstruation
Gastrointestinal symptoms

Treatment: Medicines along with surgery are usually the recommended courses of treatment. The degree of each course depends on the stage of the condition when it is diagnosed.
The aim is to retain as much kidney function as possible. If the damage of the growth is not extensive then a stenotic ureter is usually sufficient. The growth is removed with surgery and a stent is placed. The stent is removed usually after 3-4 weeks of recovery. Typically the growth is also sent for biopsy.The most extensive form of surgery in ureteral endometriosis includes a complete hysterectomy along with a nephrectomy or a kidney removal. Hormone therapy is sometimes used if the condition is identified in the early stages.
Nowadays there are even minimally invasive procedures like uretereostomy, laparoscopic ureterolysis and reimplantation that are used in the treatment for ureteral endometriosis.

So yes everyone, on top of everything else, the doctor is 99% sure that I have a rare form of endometriosis! We believe that if this is somehow blocking some tubes, this now may be pushing on the bowel! Hence the bowel symptoms!

So the next step is surgery, so I've requested to book a date and I'm awaiting quotes and a date for the procedure.. He only does every second Monday at bowral private hospital and every first at Pots Point.. So we know surgery will be a monday.. just to wait for the date..

Sunday, March 31, 2013

Does self talk help? Or am I just going crazy?

I don't know if many of you are into the self talk or self healing sort of thing, but I was willing to try.. Thursday just passed I was working 10:00am-3:00pm and then 6:00pm-10:00pm, now you have to understand that the previous day I had only worked a three hour shift and almost passed out due to pain, I cannot sit down and at that point pain killers just are not going to cut it. I was dreading Thursday, not the going to work bit.. The fear. The fear of being in pain.. It scares me into waking up of a morning.. I guess the unknown of what the day will bring..

So I guess that lead me to my self talk that started on Wednesday night.. I was trying to bargain with my body! I said that if it let me get through my basic 12 hour day, i didn't care how much pain I was in on Friday! (Ha. Liar.) so I went to sleep praying. I prayed that I could make it through the day without too much hassle..

I woke up through the entire night in bouts of pain and I felt like crap.. That morning I rolled out of bed in agony, again trying to bargain with my body! It was basically laughing at me like it would never happen.. 6 pain killers later.. It was still killing me.. I was miserable.. I went off to work and noticed maybe 4 hours after pain killers that I was breathing normally! Now you have to understand that when the pain is severe.. I find it very hard to breathe! I wasn't in pain! I felt normal! On top of the world! And guess what? The pain didn't kick in till about 2 hours before the end of my shift, I was 100% willing to take that!

I tried the self talk again on Friday night as I was working 8 hours on Saturday.. Now the pain was in and out on Saturday.. Not completely gone.. But not so severe the whole time.. Again.. I'm willing to comply!!

So, a 4 hour shift tomorrow.. Lets see what my body wants to throw at me!



Wednesday, March 27, 2013

Downward spiral.

I would love to remind everyone that I am writing this blog purely to let you understand my endometriosis story. Today I will be speaking about my current mental state, so if you feel you may judge this at all, please don't bother continue reading!

Today's blog was basically inspired by a comment made towards myself today that would have been no more than a complete joke.. "Jeeez you are so lucky you get to have so much time off work"
This was the comment.. How did I take it? I laughed it off and agreed.. But in my head I could have quite easily ranted off..
This disease is currently having a huge effect on my mental status. I started to realize that over the past few weeks I have been coming off my "high" and have been spiraling back down into my deep place.. I'm going to put this down to.. Endometriosis.. Well that and probably other things.

It's the pure emotion of being over this illness everyday. I don't want to wake up because I have no idea what the severity of this pain is going to be. I don't want to go to work because the longer I stand, the more I feel I will pass out because of this pain. This makes me incredibly scared.. I'm not lucky I can call in sick.. I can in sick because at that point I know that I cannot stand, my body feels like the devil has take over and is squeezing everything as tightly as he can.. I am sacred of other people's opinions "gosh, she doesn't sound sick!" That's right, the only thing that probably gives away that I'm not well is the constant "washed out" look I seem to have..

It dawned on me this afternoon when mum reminded me of something that we both know I don't want to hear.. "If we don't find anything, it will be a case of pain management" those were the doctors words.. This then put me down because I don't want pain management. I want answers.. A cure? If they don't find anything, I can't look at my future. They would need to put me on hospital grade pain medication at this point and what kind of life is that? I feel like I'm running on a tread mill, but the end isn't there!?

I'm on 100mg of anti depressants, but they at this stage can't help.. This isn't just a disease that effects me physically.. But mentally..

So I'm signing off for the night, already dreading tomorrow.

Tuesday, March 26, 2013

One step forward.. Two steps back..

today was the appointment with the colerectal surgeon who wanted to see the CT scan that showed my kidney stones.. I was probably already mentally unstable this morning, the fatigue had set in for the day despite the 10 hours of sleep.. I was already over it.

Basically I was in and out within 5 minutes perhaps? So the kidney stones are located on the right side where this horrific pain I have been experiencing is located in the left! No connection what so ever! We now just have to wait for these to pass as they don't seem to be doing any harm! Just my luck. I thought we may have had an answer for this pain in my kidneys and we could move forward, but as my body would have it.. Two different problems!

I left very upset and did try to cheer myself up by trying to change my appointment with my endo specialist while I was right next to his building.. But no bloody appointments! No one wanted to be on my side today!!

So now we wait till April 5th.. I don't want to take any more steps back.. I'm very frustrated..

Saturday, March 23, 2013

Bowel Symptoms and Endo..

"Bowel symptoms are a common but often unrecognised consequence of endometriosis, especially chronic and recurrent endometriosis. Nobody knows exactly what proportion of women with endometriosis have bowel symptoms; it could be five percent, thirty percent, or anywhere in between. However, we are fairly sure that a relatively large proportion of our members suffer from bowel symptoms of some sort. When the American, British, and Australian endometriosis groups were set up in the early to mid 1980s, it became clear that many of their members had bowel symptoms. At the time, few doctors realised that bowel symptoms were a common symptom of endometriosis. It was only when the national endometriosis groups began talking to leading gynaecologists about the experiences of their members that doctors began to look for and find bowel symptoms in their patients. Nowadays, most gynaecologists and many GPs understand the relationship between bowel symptoms and endometriosis. However, too many GPs still do not think of endometriosis when their young female patients report symptoms such as intermittent constipation or diarrhoea, or alternating bouts of the two. Most importantly, they do not think to ask the young woman if her bowel symptoms vary with her menstrual cycle – the key feature of bowel symptoms due to endometriosis. As a result, some young women are not being diagnosed with endometriosis" This is very relatable to myself, when I started going to my GP with pain around the bowel area so for a long time we focused just on my bowel symptoms.. I was going to gastrointestinal specialists and nothing was coming back in my tests.. Now look where I am?

Today's a blah day.

As you read the title I'm not feeling any better! I have no idea whether my Dr has poked around too much with her camera but I'm in so much pain.. I know I'm not bleeding internally as I had the CT scan.. But it makes me wonder what the hell is going on??

Mentally not feeling any better either. Referring to a previous post i feel so hopeless and lazy at the moment.. My life is basically doctors and sleep.. I feel like I'm not doing anything.
Then I have to remember my body is under so much stress at the moment that I can't do what I use too.. I miss it..

Friday, March 22, 2013

Colonoscopy Adventures.

So as most of you know today was D day for the colonoscopy/gastroscopy.. I was very nervous and hated every bit of it! Now I will be telling my experience as I believe it does really help; so if this is too much don't carry on!

I started my liquid diet yesterday (21/03/2013) I had bought some chicken noodle soup and jelly but I'm telling you, I've had neither.. I slept most of yesterday because I knew the more I was awake the hungrier I would get! I started the first dose of picoprep at 3:00pm it was disgusting.. A mix of powder and warm water. Yuck. It did start to work very quickly. Yuck. Ps.. Have some baby wipes with aloe vera.. Trust me.. You need them!
I had another dose of glycoprep at 4:00pm.. That was mixed with a liter of water and tasted like lemon and I felt very sick.. Again.. Bathroom.. Disgusting.. Also have some cream.. Again.. You'll thank me later.. Then another does of picoprep.. I was over this by then!! I had not eaten all day..

Moving onto today! I was awake by 7:15 and on the road by 7:45.. I woke up with a huge migraine and could not take anything for it! That also resulted in some vomiting and a lot of nausea in the 1 hour trip to the hospital.. I felt like shit..
I saw my doctor she waved and smiled and then it was time to be admitted.. The usual, the weight, allergies Ect.. It was a bit of a wait.. I wanted Mum to come in with me because I was scared.. They wouldn't let her.. I climbed into bed and tried to rest because I was hoping the headache and nausea would pass.. Nurses kept coming in.. And then they moved me in.. The lovely anesthesiologist promised she would put something in my IV to get rid of the headache.. I was very dehydrated.. And freezing. I could not maintain a body temperature. She put the needle in and there was a rush of fluid.. I was then told to roll over.. And I was out!!

I woke up very drowsy and in a lot of pain in my lower abdomen.. I felt around and there was no bag or such.. Finally after 36 hours I had a chicken, ham and cheese and tomato sandwich! Trust me.. Yum! I waited a while longer and went to sit in those lovely big chairs with mum..
Dr came and said she didn't find anything to be too concerned about.. She did find something between the vagina and rectum region, but we have to wait.. I was dissapointed.. It's frustrating.. I told her about the pain and she ordered an emergency CT scan to make sure I wasn't bleeding internally.. Had that done as waited two hours to find nothing there.. But.. I have about 6 kidney stones! It's one thing after another right now!

I'm booked in to see her on Tuesday where I will be referred to someone for my kidneys.. I then see Dr Reid on the 5th of April.. So it could be another month before my laposcopy.. I'm in so much pain.. I'm 100% over it.. So that's probably what I'm upset about.. That it may be another month in absolute agony.. Which I'm in now as I believe she's probably upset my endo.. So that's what's happening! Xx

Wednesday, March 20, 2013

Awareness!

Today an envelope arrived from the endometriosis association of America with my pamphlets and ribbons for awareness! I am so excited! Unfortunately only 5 ribbons arrived but I would love to have so many more made! People need to become aware of what this disease does to us women; I'm so excited to wear this!

Ps.. Have started eating less and less food in preparation for almost starving myself for tomorrow! I'm not allowed and solid food! Yuck! I hate it! I'm sure you'll hear tomorrow more about it ;) x






Monday, March 18, 2013

I feel like..

This comes from last night when I was rolling around in a lot of pain and my mental status was way down. These are the moments I go through every little thing in my head.. Last night I thought how lazy am I? I see all my friends at uni at the moment doing something with their lives and then I look back at mind.. I look at the fact that I do nothing with my day and that's due to the fact I spend most days riddled with pain.. There's a part of me that feels so helpless.. I want to be working 9 or 10 hours a day.. But physically I can't.. I spend times almost passing out because of the pain, and that's where I stop and think. I feel lazy.. That's all. I want to prove that I am worth something and that I can do it. Right now if someone asks me what I'm doing. It honestly sounds like I'm the laziest person around and I feel like people judge me for that.. I want to go back to working non stop.. I miss it.. It gave me something to think about.. I just physically can't..

Download this app!

Hi everyone!
Saw someone post a photo of this app on Instagram and I went to investigate and I believe it's quite good! It's all about managing chronic pain! I'll probably forget to use it in while but until then it really helps! I recommend you download it!

Sunday, March 17, 2013

Found these on Pinterest! Enjoy! Xx
Ps.. Over pain.







Friday, March 15, 2013

Nothing else we can do.. for now..

So for those of you who read yesterdays blog you'll know that the pain has been almost unbearable for the past 48 hours.. I had to ring in sick again this morning as I spent half the night getting up to re heat my wheat pack (Which did relieve some pain!) I felt horrible ringing in sick to work again, I'm not sure if everyone at work is aware of the situation or completely understands it, but as everyone knows.. I don't look sick! Besides the red baggy eyes, I look 100% fine! I often think to myself would I rather look sick? Maybe then people would understand the condition more if I looked as crap as I felt!!The hospital has received my admissions forms, so hopefully all systems go for next friday! I'm very nervous as to what they may find, but I am so over this disease at this point I'd rather them find something and remove it.. My tummy was very distended last night.. I did have a thought that possibly this all could be due to the extra hormone pills I have been put on over the last week.. I called my gp this afternoon and he quickly said that they would've had nothing to do with it. So I was back to square one. He recommended that I came in to see him.. So I went and saw him this afternoon and basically they're is nothing we can do for my pain I was already on prescription pain killers which weren't really helping.. He also felt my tummy and said basically all the medication I'm on is most likely making me constipated.. So if I am, and of course the endometriosis is either on the outside of the bowel or has invaded the bowel, it will be stretched and prodded.. So basically I shouldn't eat! hahaah! So I'm pretty miserable at the moment.. I'm honestly over this pain.. I have everything riding on friday, so heres hoping they find something!

Thursday, March 14, 2013

Over it.

This is a truly private moment that needs to be shared with you all.
This is a face that is in so much pain it is hard to breathe. This is the face that I finally put on when it's all too much. It is one of those days where this disease is taking over my life. I had to call in sick because I got to mums school and bust out crying because of the amount of pain I was in. This is a disease that can not be controlled by pain killers.. I am over it.

Wednesday, March 13, 2013

Doesn't this look like fun??

Keeping up with the Kardashians..?

Everyone knows who the kardashians are, and I will be the first one to admit that I am basically obsessed with this tv show; now basically I've started watching Kourtney and Kim take Miami and anyone who watches tv or reads any type of media knows that Kim Kardashian is currently pregnant. Now in the last episode of Keeping Up With The Kardashians season 7. You watch as Khloe and Kim go and see a fertility doctor.. I have loved Khloe for years, she is my favorite and she has been married for 3 years now I believe? I have watched as she has "possibly" miscarried, her ups and downs with her fertility issues and the fact that in 3 years she has not become pregnant.. Now Khloe isn't producing or releasing eggs I believe so she is going through her own fertility struggles, I feel for her..
But you suddenly I feel out of the blue you find out that Kim has her own fertility struggles??! Now I hear the doctor say that Kim's eggs are low and basically just needs to go off the pill due to being on it for many years..

Now this seems about right doesn't it? For anyone who has been on the pill your hormones are going to be very low. Now today watching the Kardashians, Kim is still talking about her fertility issues and "apparently" having the eggs of a 50 something year old. She goes on the whole episode that her chance to be a mother has been taken away. This makes me think.. now are Kim's issues with her fertility as bad as she has made them out to be? Is this show scripting an issue that hits home to us for ratings? Am I being too harsh? But from the time this episode was filmed and the fertility issues for Kim begun, it's only been maybe.. 4 months of her "trying" to get pregnant..

I'm sorry Kim, I'm generally a huge fan of your show.. But maybe Kris Humphries is right? If you've lied about your fertility..
What else have you lied about? Us woman actually have a struggle with fertility and I don't want you cashing in on something that isn't true to begin with.

Tuesday, March 12, 2013

We need a bit of laughter!

I thought these all some what applied to me! Have a laugh, I know I need it!















For the suffers <3

And this is why I am writing this blog <3

Fact or Myth?

I have borrowed these lovely pictures from The Endometriosis Awareness Campaign on Facebook; I think these are very important pictures for us to discuss what's a myth or what is fact!

So basically all these pictures are myths.. The only one that I can confirm is not entirely a myth is "Endometriosis is easy to diagnose since it causes severe monthly pain" this is a yes and no question since some women go their entire lives with no symptoms of pain until they're trying to conceive and they find out why!
Interesting isn't it??





















Monday, March 11, 2013

We need you.

I've decided to dedicate and talk about how endometriosis doesn't just effect me.

Edward what would I do without him? He probably suffers with this disease just as much as I do. He feels helpless when I'm rolling around on the floor crying my eyes out because I'm in so much pain, he's the one who comes with big bunches of flowers after every-time. He doesn't know how to deal with this disease and is trying to learn with me every step of the way..

Mum what would I do without mum taking me to every appointment? Mum is having to have time off school to constantly come, I know how hard it is! But without her coming with me; I'd be very scared and alone!

Everyone needs to realize that with a chronic illness it doesn't just start to affect you; it affects the people you love. I have heard some stories of people being left because its "too hard" so please, help someone with a chronic illness..you don't know how much they may need you..



Pain in my ass??

Well I saw the colorectal surgeon this afternoon and I am booked in for surgery Friday the 22nd! So next week.. I'm very nervous, I hate the preparation for this.. We had a lot to talk about which I can't remember half of it, but if it has perforated the bowel I will be looking at a ileostomy.. So basically a ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected in an external pouching system stuck to the skin. Ileostomies are usually sited above the groin on the right hand side of the abdomen. I'm very much hoping that it isn't going to have to come to this; I watched my mother go through a ileostomy in 2006, she did remind me that if she was able to live with it for a year, I can too.. I dont know many 18 year olds that go through? I said that to the colorectal surgeon this afternoon, I need to remember that I have been given this disease for a reason, I am meant to raise awareness, I need to think of this every surgery..

Saturday, March 9, 2013



So basically today I am posting for you my endo sisters! I often use these stretches when I'm in the most pain! They honestly do work, so please if you're looking for relief use these stretches!

Thursday, March 7, 2013

Nodules



The good, the bad and the ugly!

Alright! So today was my transvaginal ultrasound! So basically we firstly couldn't find the place! (Edward and I can't read numbers!)

edit; Mum was reading this and said this did not sound right! I'm talking about the building people!!!!)

I had to have an enema an hour before and let me say this isn't 100% pleasant.. Bearable.. I don't know which I prefer.. Picoprep or an enema! Hahaa!

This procedure was very unpleasant! I don't know why they do such an invasive ultrasound for that area! It hurts! So basically we were looking for nodules that stood out all over the bowel, as you may have read I'm looking at having a bowel resection.. So they needed to stand out to get the ball rolling! They found 4 nodules.. They believe that there is one giant one or it's two very close together and then two that are 1cm x 1cm.. they are all over the lining of the bowel.. We found adhesions as well!
Thank god I can't understand ultrasound people talk!

Those ultrasounds unless you're looking for a baby are very confusing! But interesting! Going to my GP this afternoon and I'm going to ask for some stronger pain killers!
Colorectal surgeon on Monday! Xx

Wednesday, March 6, 2013

Endometriosis shirts!

My gorgeous Edward and I as you may have seen ordered these for each other for valentines day! They are such fantastic quality and I can't wait to order more to spread awareness! I'll be wearing this everywhere!

We ordered these from zazzle.com and I believe I may have a $5 off voucher for friends somewhere!


ps. How lucky am I to have such a wonderful supporting boyfriend who will wear this?

Keep fighting!