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!! 

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..

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!

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.

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..

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..